Articles on Severe ME :

Here are a selection of articles that Linda and I have published over the years, trying to raise awareness of Severe ME, especially the politics.

We have found that you simply have to stand up and be counted. You cannot allow the truth of ME to be compromised, for to do so, is to embark upon that slippery slope downwards towards relativism ; miles away from any hope of proper research, treatment and a cure.

Our starkest learning has been this :

The greatest threat to people with ME right now, comes not from the psycho/corporate lobby; they are so easily exposed. Neither does it come from the extreme ME fringe, which is far too busy eating itself up. It comes from the moderates, the lukewarmers, the pragmatists, the compromisers right at the centre of the ME activism movement.

Contents :

The Dark Side of Medicine.

Greg Crowhurst Jan 3 2011 (permission to repost)

In early December last year, the German Psychiatric Association (DGPPN), 65 years after the end of the Third Reich, finally apologised for the crimes committed by psychiatrists during the era of National Socialism. The original article can be found here.

In the article, English translation here, DGPPN president Frank Schneider admits that : "This darkest part of our history has been shunned and repressed much too long. A Professor Gerhardt Schmidt, for example, head of psychiatry in Lübeck, Germany, who directly after 1945 came to a clinic where patients starved to death, meaning they were killed, wrote a very outright book about these conditions. However Schmidt was not able to publish his book for 20 years because, according to the DGPPN, " he was facing a Mafia of psychiatrists who didn’t want anybody to foul their nest. In the 1980s it was a moment of glory in our association to award him with a medal for it. "

Schneider describes how after the Second World War" three renowned psychiatrists, who made medical estimates for enforced sterilizations and who decided upon life or death, became presidents of our association and even honorary members"

What’s even worse: "In the 1960s, when the question arose whether people who suffered forced sterilization should get any indemnity …psychiatrists appeared as an authority on the subject in the Bundestag (Lower House of German Parliament). In an advisory committee they declared that forced sterilization was compliant to the rules at that time and it was all done within the then current scope of science and nothing was to take back. This is once again a debasement for the victims. There was nobody to say anything against that."

I write this after listening to a profoundly thought-provoking interview on the BBC World Service yesterday with Bernhard Schlink , author of The Reader, that extraordinary book, now a film, which has so captivated audiences world wide. Its subject : the guilt , particularly of second generation Germans, especially, over the atrocities committed by their fathers, grandfathers in the War and their struggle to understand why.

Because of the way my life, as a carer for someone with Very Severe Myalgic Encephalomyelitis (ME) , is dominated absolutely and severely curtailed , by a present day psychiatric mafia, who in the employ of the medical Insurance industry do all they can to ensure that my wife receives no biomedical treatment for her disease, I was hanging on every word Schlink said.

For example, I opened up my emails this morning and there was a piece by Jan van Roijen about a " UK Prof", " a member of the supervisory board of a company named PRISMA", the same company which is " being paid many millions of pounds to supply ‘rehabilitation’ programs (such as CBT and GET) to the NHS for use on ‘CFS’ patients."

This Prof "is also an officer of the insurance company UNUM. Insurance companies save a huge amount of money in payments if illnesses can be viewed as mental and not physical.

Anyhow this Prof was involved in a case where a severely ill, virtually paralysed young boy with ME/CFS was subjected to horrific psychiatric ‘treatment’ including throwing him into a swimming pool:

i.e swim or drown....

(By the way, they forced that youngster, aged 11, onto a Ghost train first.....)

What really struck me yesterday was how Bernhard Schlink portrays the German society , at the time of the Third Reich, as an extremely well educated, seemingly-solid and cultured society . Chillingly, many of those who committed such tremendous atrocities, turned out to be kindly, gentle folk, caring teachers , who went on to be responsible members of society.

I am sure that van Roijen's "Prof" above and his colleagues are not "monsters"; that is far too simplistic an explanation.

However their impact upon my life and that of my wife, her screaming agony that she must endure endlessly , and all those who have died, as a direct result of their cruel, barbaric interference, surely must cause them a restless night or two ? They know that there's 5000 biomedical papers refuting their made-up of the top of their heads theory, that ME is CFS is Psychiatric ......don't they surely???

....Well,maybe not . As Say No to Psychiatry suggest :

" In a very real sense both the 14th century priest (burning another human being at the stake) and the modern psychiatrist are nothing more than very dull people, incapable of a calm detached observation of what actually is, and asserting very stupid ideas which far too many people readily accept without any careful examination or resistance. Both appeal to extensive "educated reasoning", "authority", "logic" and "rational methods", but as will be discussed more in this web site, "logic" and "reason" fail completely at arriving at "truth" or "positive results" when the logic or reasoning is based upon false, absurd, and incorrect basic ideas, notions, postulates or fundamental axioms."

...For sure, anyone who knows anything about ME politics would be the first to admit that the psychiatric lobby's "logic or reasoning is based upon false, absurd, and incorrect basic ideas, notions, postulates or fundamental axioms."

To understand this phenomena better, we could do worse than turn to the Annals of General Psychiatry ; in 2007 Rale Rous, from Tel Aviv University, published an excellent study on what can be learned from the Nazi era, for clinical and research practice.

Fascinatingly he explores the "Common assumptions leading to gross ethical misconduct". One of the most relevant conclusions, I suggest, for us in the ME world is the assumption that :"Philosophical constructs and ideas should define clinical practice. " As Rous chillingly explains :

"During the period of the Nazi regime, psychiatry supported compulsory sterilization and euthanasia of the physically and mentally ill, and subsequently, the killing of "inferior" races. They did this by applying scientifically invalid conclusions from evolutionary biology ... Aside from the fact that these philosophical constructs and scientific paradigms of evolutionary theory were flawed, they were also immoral and contravened basic tenets of medical ethics and clinical practice. "

...tragically today psychiatry supports throwing severely disabled children into swimming pools and leaving them to drown,sectioning and locking young people up in a mental hospitals, taking of severely disabled children away from their parents and denying them access, leaving of tens of thousands to suffer unnecessarily, for decades on end, all under the philosophical construct "Complex Somatic Symptom Disorder"

.

As Rous concludes : "A dark side to medicine exists."

Indeed it does : it's called the PACE trial.

2011 : a wish-list.

Greg & Linda Crowhurst Dec 30 2010 (permission to repost)

"Daring ideas are like chessmen moved forward; they may be beaten, but they may start a winning game." Johann Wolfgang von Goethe

By the skin of our teeth, we arrive at the end of yet another year of the torture and living hell that is Severe ME. Here is our wish list for 2011 :

  • That the truth of XMRV will be uncovered and revealed.
  • That the NHS will at last perceive the folly of backing the psychosocial approach
  • That medical Consultants will find the honesty and integrity to speak out about the reality of this terrible disease.
  • That the newspapers will lose their bias and stop reporting the psychosocial approach , which charades as treatment and the truth of ME.
  • That ME will finally be treated separately from CFS and that the biomedical truth of ME will at last be acknowledged and scientifically and medically investigated.
  • That the Medical Research Council will stick to its recent announcement , stand-up against the psychiatric bias and back soild biomedical research into ME.
  • That the UK Government will address the shocking vested interests underlying the crass psychosocial services that perpetuate harm against people with ME
  • That people with Severe ME will no longer be neglected, negated, abused and virtually excluded from medical research.
  • That the PACE trial will not have the harmful effect that everyone expects it to have, that it won't be allowed to influence NICE's policy and practice within the UK.
  • That Norfolk will finally be the first PCT to provide a biomedical service with integrity, in the whole of the UK.
  • That the new Benefit Changes will not do harm to people's quality of life, that the UK Government will actually develop appropriate biomedical policies and procedures.
  • That CBT and GET will be confined to the dustbin of history

Call us dreamers at your peril : "...the dreamers of the day are dangerous men, for they may act on their dreams with open eyes, to make them possible." Thomas E. Lawrence

A Stakeholder Response to NICE by Greg Crowhurst

In accordance with the stakeholder consultation process of 1 to 14 November 2010 concerning NICE’s scheduled 3 year clinical guideline review I write with reference to: 1. The National Institute for Health and Clinical Excellence (NICE) Clinical Guideline 53 entitled ‘Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management’ published in August 2007. 2. The related ‘National Institute for Health and Clinical Excellence Centre for Clinical Practice Review consultation document’ dated 1 November 2010.

For the reasons listed below , I am greatly concerned that Clinical Area 1, case definition, concludes that "no conclusive evidence was identified that would invalidate current guideline recommendations. " that Clinical Area 3, management, concludes that : "There is currently no new published evidence that would invalidate current guideline recommendations ."

  • the competing interests of the original GDG members were undeclared,
  • the patients to whom the Guideline is meant to apply were not defined: the Guideline does not describe or distinguish the neurological disorder ME/CFS from "medically unexplained chronic fatigue" (a classified somatoform disorder)
  • patients were sent the Evidence Review, a massive 487 page document, only four weeks before receiving the Questionnaire on April 7th 2006,which had to be returned by May 5th.
  • the Questionnaire only concerned itself with 18% of the issues under discussion, so the consultative process did not involve the full range of relevant issues. Misleading instructions to questions 29-61 made it likely that answers to those questions were erroneous. Out of a probable ME population of 240 000 patients, only 219 responses to the Questionnaire were considered, of which only 119 were from patients.
  • NICE failed to include experts from all the relevant professional groups on the Guideline Development Group.
  • Patients' / carers' views were not given equal weighting and status, as subsequently confirmed by two members of the GDG
  • NICE entirely failed to heed the submitted evidence and disregarded the published dangers of GET for patients with ME/CFS who have cardiovascular and respiratory problems.
  • By limiting their consideration of the literature to that which supports the psychiatric paradigm of ME/CFS, NICE exhibited intrinsic psychiatric bias and failure to take account of the available published biomedical evidence about ME/CFS (over 5000 papers), without knowledge of which the Guideline fails to provide an aid to diagnosis (as was its remit).
  • The sole management recommendations are based on weak and inconclusive studies of dubious quality on heterogeneous groups of people, the majority of whom are unlikely to have ME but may have suffered from any one of over 30 other disorders where "fatigue" is a symptom.
  • The guideline was not based on a full and true picture of the severity of the illness and symptoms and itself concedes that its management strategy cannot be recommended either for the severely affected or for children.
  • The Guideline's conclusions did not coincide with the majority professional view of the international medical and scientific communities about ME/CFS.
  • The Guideline compromised the reality of ME/CFS by remaining irrationally equivocal about the WHO classification of ME/CFS as a neurological disorder.
  • NICE confused "CFS/ME" with other fatigue states and has married together two opposing views : the psychiatric model which says "unhelpful illness beliefs", "thoughts, feelings, behaviours" and "over-vigilance to symptoms" perpetuate the illness, and the biomedical model. This has led to a flawed document that meets no-one's real need,
  • There are proven vested interests in portraying ME as a psychiatric syndrome, as opposed to a seriously debilitating physical illness, with multi system dysfunction, as highlighted by Ian Gibson MP in his Inquiry (2006)
  • The GDG was selective in the symptoms listed (i.e. emphasising psychosocial symptoms whilst ignoring primary biomedical symptoms)
  • People with ME/CFS have been shown to be extremely sensitive to pharmacotherapy; this is denied in the Guideline, which is a complete rejection of the patients' experience as well as the scientific evidence.
  • NICE placed unreasonablemphasis upon the seriously flawed and biased Systematic Review of the literature carried out by the Centre for Reviews and Dissemination (CRD) based at York. The York Review has research misconduct as one of its hallmarks, and this was brought to the attention of NICE but was ignored
  • The actual number of studies on which NICE relied to support its management recommendations is very small and therefore inadequate for these studies to be used as the "evidence-base" of the safety and efficacy of the regime recommended for implementation nationwide.
  • NICE recommended that laboratory tests which in other countries have established the organic nature of ME/CFS and which point to potential therapeutic interventions should be specifically forbidden in the UK
  • NICE disregarded the fact that patients are almost universally opposed to CBT and to GET, because survey after survey has shown that GET can be harmful to people with ME.
  • NICE recommends "CBT and GET "because it believes that "currently these are the interventions for which there is the clearest research evidence of benefit."(1.6.2.4). However, this "research" (seven Random Controlled Trials (RCTs) of CBT and four RCTs of GET) is at best inconclusive and at worse non-existent. When measured objectively, the CBT trials delivered no statistical change. Regarding the graded exercise therapy (GET) trials,only two RCTs had positive results, but after 24 weeks there were no benefits at all.
  • There is no process in the Guideline to distinguish between when a patient with ME/CFS is extremely ill and when they are no longer so ill and may be able to cope with gentle rehabilitation.
  • NICE has produced Guidelines for 19 different clinical conditions. Only in the case of the organic disorder ME/CFS is CBT recommended as the primary treatment of choice.

Psuedo Science in the UK : A Stonebird response to Peter White

Just ahead of the PACE trail report, Peter White has published a report : Psychiatric misdiagnoses in patients with chronic fatigue syndrome, which found that out of 135 participants at a PACE trail center , diagnosed with "CFS" according to the Oxford Criteria , 56% had a" co-morbid psychiatric diagnosis."

Greg Crowhurst, Sept 17th 2010

Permission to repost

Of these :

  • 31% had a major or minor depressive episode
  • 11% had dysthymia
  • 35% had an anxiety disorder
  • 2% had a an obsessive compulsive disorder
  • 6% had post-traumatic stress disorder
  • 8% had Social Phobia
  • 15% had a "specific phobia"

There were 14 assessing doctors :

  • 10 were psychiatrists (one consultant and nine trainees).
  • one was a consultant physician
  • three were general practitioners with a special interest in CFS.

Is this a surprise ? No !!

White’s report simply confirms how much The Oxford Criteria have nothing to do with ME.

Way back in 1999 Fred Friedberg, Clinical Assistant Professor, Department of Psychiatry and Behavioural Science, State University of New York, pointed out the differences between CBT trials in England and the US:

"Several studies of graded activity-orientated cognitive behavioural treatment for CFS, all conducted in England, have reported dramatic improvements in functioning and substantial reductions in symptomatology. On the other hand, cognitive behavioural intervention studies conducted in Australia and the United States have not found significant improvements in functioning or symptoms. Descriptive studies of CFS patients in England, the US and Australia suggest that the CFS population studied in England shows substantial similarities to depression, somatization or phobia patients, while the US and Australian research samples have been clearly distinguished from primary depression patients and more clearly resemble fatiguing neurological illnesses. " (JCFS 1999:5: 3-4:149-159).

(Hooper 2010 Biomedical Evidence Summaries) )

The Oxford criteria upon which the PACE and FINE trials were based , were drawn up by psychiatrists in 1990 and broaden the 1988 Holmes et al CFS criteria to include all those with psychiatric “chronic fatigue" , while specifically excluding those with neurological disorders. The Oxford criteria state: "The following guidelines were agreed. There are no clinical signs characteristic of the condition. Psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion". (Williams 2004)

As Margaret Williams (2004) points out : "This opens the door to the world and his wife if they feel chronically tired for longer than six months without any medically determined cause ."

Used only by a small group of English psychiatrists (the Wessely-school) and by the university of Nijmegen, Netherlands (Neilson 2002), the Oxford criteria , by definition, exclude all those with authentic Ramsay-defined ME from study .

By the time the MRC announced that the Oxford criteria were to be used as the criteria for the PACE/FINE trial, in May 2003, they had been well and truly superseded

Research, for example, published in 2002 found that in terms of 'who has ICD ME/CFS' ? :

  1. CDC1998 criteria 80% plus may have ME/ICD-CFS
  2. CDC1994 criteria 40% may have ME/ICD-CFS
  3. 'Oxford' criteria 10% may have ME/ICD-CFS

(Neilson 2002)

It is particularly significant how US researchers noted in 1999 that : “ "neither the 1988 nor the 1994 case definition identifies the sickest patients because information about symptom severity is not required to make a diagnosis of CFS” ( Hill et al 1999)

In 2004 Lord Warner, confirmed that the UK accepted that ME/CFS is a neurological disease , listed as such by the World Health Organisation (WHO) under ICD-10 G93.3, yet the PACE/FINE trials still set out to study only psychosocial management regimes and treatments using as a set of criteria "ICD10: 48.0" : "Mental and Behavioural Disorders"; subtitled "Other Neurotic Disorders" (Neilson 2002)

Patients wrote to the MRC in 2004 pointing out how the Canadian Clinical Case Definition , "was produced by an Expert Medical Consensus Panel of eleven physicians who between them treated/diagnosed over 20,000 ME/CFS sufferers worldwide, enabling medical practitioners to more easily distinguish ME/CFS, with its pathological fatigue, from ordinary fatigue and other fatiguing illnesses." (Kennedy 2004) Carruthers himself, lead author of the Canadian Criteria, wrote to the MRC confirming that there is no valid reason why the MRC should not use those Guidelines in its studies of ME/CFS (Williams 2004)

Carruthers had previously made it clear that : "the use of these Oxford criteria for selecting ME/CFS patients is a gross violation to the "International Classification of Diseases" (ICD) of the World Health Organization (WHO), and therefore at the same time a serious case of discrimination."Journal of Chronic Fatigue Syndrome 11(1), 2003.

A DePaul University (US) study found that patients diagnosed according to the Canadian criteria had more variables that significantly differentiated them statistically from the psychiatric comparison group, and that the Canadian criteria selected cases with less psychiatric co-morbidity and more physical impairment (JCFS 2004:12(1):37-52) but in its Clinical Guideline CG53 on “CFS/ME”, NICE recommended that the Canadian Criteria should not be used in the UK. (Hooper 2010 Biomedical Evidence Summaries http://www.stonebird.co.uk/hooper.html)

Given that they specifically exclude people with ME from study, there was no compelling reason, whatsoever, to have based the PACE and FINE trial upon the Oxford criteria; apart from a serious case of discrimination.(cf Neilson 2002)

As Hooper (2010) points out the MRC's PACE/FINE trials:

".. seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded."

Is Peter White really not aware, by now, that :

ME/CFS and Chronic Fatigue are not the same.

ME is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992), and the ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48) Researchers have failed to distinguish between ME and CFS and/or between subgroups. (Anon 2001) As Carruthers & van de Sande (2005)point out: “Chronic fatigue must not be confused with ME/CFS because the ‘fatigue’ of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms.

At a Press Briefing held on 3rd November 2006 by the US Centres for Disease Control to announce its ME/CFS awareness campaign, Anthony Komaroff, Professor of Medicine, Harvard Medical School, said:

" It’s a pleasure to be here today with several people who have dedicated successfully a big part of their lives to trying to understand and get recognition for this terrible illness.

"It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over.

"Brain imaging studies…have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain…(and) they change a person’s life.

&quuot;Today we have powerful new research technologies and tools we didn’t have even 20 years ago, and they are being put to good use by laboratories all over the world".

(Hooper 2010 Biomedical Evidence Summaries) )

ME/CFS is not a somatoform disorder.

According to Nancy Klimas : "there’s evidence that the patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis." (Hooper 2010 Biomedical Evidence Summaries) )

The documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME/CFS patients (Williams 2004) have led to the WHO classification of ME/CFS as a neurological illness. The UK Department of Health and the WHO Collaborating Centre at the Institute of Psychiatry have agreed that ME/CFS is undoubtedly neurological. There is no published evidence whatsoever, as opposed to opinion, that ME (as distinct from chronic fatigue) is a psychiatric disorder. (Williams 2004).

Unlike somatisation disorder, M.E. is not ‘medically unexplained.’ M.E. is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms [and] many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. (ME Society of America)

ME/CFS is not “cured” by Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).

It is very well known that CBT and GET are potentially harmful to anyone with neurological ME.

The Chief Medical Officer (2002) himself warned that exercise-based regimes advocated for less severely affected patients tend not to have been studied among those most severely affected. Shepherd (2001) warns that as much care should be taken in prescribing exercise as in prescribing pharmaceuticals for ME/CFS patients do not respond to exercise in a manner that is expected of healthy people (Streeten et al 2001)

As Neil Abbot points out : "There have been only five trials of CBT with a validity score greater than 10, one of which was negative for the intervention; and only three RCTs of GET with a validity score greater than 10. …..Until the limitations of the evidence base for CBT are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed".

ME/CFS is considered to be a rather harmless condition by most physicians, but patients with ME/CFS are often more functionally impaired than those suffering from type 2 diabetes, congestive heart failure, multiple sclerosis, and end-stage renal disease.

It is not "fatigue" or "tiredness" that is the one essential characteristic of ME/CFS but central nervous system (CNS) dysfunction (Bassett 2006). As leading M.E. expert Dr Byron Hyde MD (2003) explains: " The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.7quot;' Drs Cheney and Peterson describe ME/CFS as " A global disablement, nearly comparable to paralysis." (Johnson 1996) Dowsett comments that "Fatigue" is the wrong word. Fatigue is a silly word." (Colby 1996) Dr David Bell M.D (1995) describes the word "fatigue" as: "A very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. "

In 2003 The Canadian Expert Consensus Panel published its medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome, making it compulsory that , unlike the Oxford Criteria, in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. (Carruthers et al 2003).

ME/CFS is not depression.

Research, for example, shows that CFS patients show more alpha electroencephalographic activity during non-REM sleep, but this is not seen in dysthymic or major depressive disorder (Whelton, Salit, & Moldofsky, 1992). Cognitive changes are also not due to psychiatric co-morbidity (Vercoulen et al 1998 Backwood et al 1998) SPECT cerebral blood flow studies of persons with CFS show decreased blood flow in several key areas such as frontal lobes and brain stem which are different from both healthy controls (Barnden et al, 2001Costa et al, 1995) and depressed subjects (Schwartz et al, 1994; Fischler et al, 1996). PET scan studies have reached similar conclusions (Tirelli et al, 1998. Bakheit, Behan, Dinan, Gray, and O'Keane 1992) found up-regulation of hypothalamic 5-hydroxytryptamine receptors in patients with postviral fatigue syndrome but not in those with primary depression.

The predominant psychiatric paradigm, still seems to be that patients have medically unexplained chronic fatigue, and that their problems derive from deconditioning consequent on physical inactivity at best, and simple avoidance behaviour (underpinned by abnormal illness beliefs) at worst. (Scottish Cross Party Submission 2005). Yet : " no proponent of a psychological aetiology has ever hinted at the exact psychological mechanism"(Walker 2003)

What happens in ME/CFS, however, has little to do with cardiovascular deconditioning (Spence & Stewart 2004) and is more related to chronic orthostatic intolerance/postural tachycardia syndrome (POTS), caused by vascular dysfunction. Goudsmit (2005) points out that studies have shown that most patients do not avoid minimal activity and that lack of fitness is not related to the fatigue in CFS (Bazelmans et al 2001 ) . Moreover, deconditioning cannot explain the documented delay between the end of exertion and the exacerbation of symptoms, the upregulated immune system etc. (De Merlier et al 2000)

In 1996, US neurologist Dr Benjamin Natelson et al evaluated patients with ME/CFS for a placebo effect in a randomised, double blind, controlled trial and found no evidence that ME/CFS is an illness due to patients being overly suggestible or that ME/CFS is a psychogenic illness, and that: “No clear effect of any treatment has ever been demonstrated in this devastating illness” (Psychopharmacology 1996:124:226-230).

In 1996, Natelson et al examined the rates of somatisation disorder (SD) in ME/CFS relative to other fatiguing illnesses and found that the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective: “(ME)CFS can be viewed as an organic disease involving many organ systems or as an undifferentiated somatoform disorder. A diagnosis of somatoform disorder may be so arbitrary as to be rendered meaningless in illnesses such as (ME)CFS” (Psychosom Med 1996:58(1):50-57).

(Hooper 2010 Biomedical Evidence Summaries) )

Peter White's paper , based upon a cohort defined by the Oxford Criteria, which as White himself acknowledges is predominantly people with menatl health issues, negates any justification for CBT and GET for neurological ME. At best it belongs in the realm of what psychiatrist Alan Gurwitt in 2002, termed " Pseudo-science" in the UK":

"I have often been embarrassed by and angry at many of my colleagues who fall in line with self-declared ‘experts’ who see somatisation everywhere. Ever since the mid-1980s there have been ‘researchers’ with an uncanny knack at cornering research funds because of their already-formed biases that are in synch with the biases of the funding government organisations (and who) indicate that CBT and graded exercise will do the therapeutic job, thus implying a major psychological causative factor. I have noticed the following deficits in their work, their thinking, their word choices and their methods"

(Hooper 2010 Biomedical Evidence Summaries) )

When is the UK finally going to to start acknowledging the difference between those who have the WHO -classified nuerological disease called Myalgic Encephalomyeltits and those who have a chronic fatigue /mental health disorder , who are being wrongly labelled as having ME - and stop pretending that one is the other ? Both groups are in need of help, but it is unfair to both to put them together and pretend they have the same illness; in the case of myalgic encephalomyelitis it is profoundly dangerous to keep on promoting the myth that ME is a mental health disorder.

As far as ME goes, the PACE trial is a ghastly waste of money As`Linda Crowhurst (2010) points out :

" ME is a WHO classified neurological disease with multi- system dysfunction and the people who have it, like me, are extremely physically ill. It would be like saying " you have cancer or AIDS, let's treat you by changing your thoughts and getting you to exercise". That's just not going to be effective.

"Perhaps now the MRC will stop wasting millions of pounds like this on psychological studies when biomedical research, teats and treatments are so greatly needed for desperately ill ME patients across the country. ""

( Crowhurst L 2010) It Should have Been Obvious

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Bakheit, A.M.O., Behan, P.O., Dinan, T.G., Gray, C.E., & O'Keane, V. (1992). Possible upregulation of hypothalamic 5-hydroxytryptamine receptors in patients with postviral fatigue syndrome. British Medical Journal, 304, 1010-1012.

Bassett J (2006) Testing for Myalgic Encephalomyelitis : Introduction, Hummingbird.

Bazelmans E, Bleijenberg, G, van der Meer, JWM and Folgering, H. Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity. Psychol Med, 2001, 31; 107-114.

Bell, David S MD (1995), The Doctor's Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts

Blackwood,S.K., et al (1998) Effects of exercise on cognitive and motor function in chronic fatigue syndrome and depression. Journal of Neurology, Neurosurgery & Psychiatry, 65, 541-546.

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Fischler,B., D'Haenen,H., Cluydts,R., Michiels,V.,Demets,K., Bossuyt,A.,Kaufman,L., & DeMeirleir,K. (1996) Comparison of 99m Tc HMPAO SPECT scan between chronic fatigue syndrome,major depression and healthy controls: an exploratory study of clinical correlates of regional cerebral blood flow. Neuropsychobiology, 34, 175-183.

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Hooper, M. & Montague S 2001. Concerns about the forthcoming UK Chief medical officer’s report on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) notably the intention to advise clinicians that only limited investigations are necessary

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Vercoulen et al(1998) Evaluating neuropsychological impairment in chronic fatigue syndrome. Journal of Clinical & Experimental Neuropsychology, 20, 144-156.

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Psychological Assault .

As it did over the NICE guidelines Action for ME has chosen again to take a lone controversial stand on ME, one not supported by the majority of UK ME Charities.

Greg Crowhurst, Aug 23 2010

Permission to repost

Any clear understanding of ME can only be based upon a clear definition. It is difficult to find out the exact details of the proposed Bristol LP study , however if it is based upon the Oxford Criteria, then the Ethics Committee will not be able to discern precisely who the trial is for, as the Oxford criteria exclude those with neurological disorders .

Used only by a small group of English psychiatrists (the Wessely-school) and by the university of Nijmegen, Netherlands (Neilson 2002), the Oxford criteria , by definition, excludes all those with authentic Ramsay-defined ME from study .

(This is good, because in theory it should exclude children with myalgic encephalomyelitis, from the study.)

The proposed study seeks to compare the LP against "medical treatment ". What "medical treatment" specifically ?

The fact is there is no medical treatment for people with ME available on the NHS currently; there are only psychiatric therapies (Cognitive Behaviour therapy and Graded Exercise Therapy), strongly condemned right across the board by patient groups, is this proposed study referring to some treatment which no one knows about ?

How can the Ethics Committee determine whether or not these children might benefit from training to change their thoughts and beliefs if proper biomedical tests, which do not yet exist on the NHS, to determine what is biomedically wrong with the children have not been carried out first?

What child isn't going to want to be well, to please, to not admit failure and this, as the 25% Group (CoCure Aug 22 2010) the ME Association , TYMES Trust, Invest in ME and others have stated, brings up very troubling issues indeed. One aspect that might deserve more attention though, is the danger to children and the devastating impact upon families, of participating in a process that in Spain is firmly viewed as a cult :

" LP is a health sect and as such, it should be denounced and kept away from children. In Spain we have had them researched by Sect Specialists and yes, they are a sect (use of hypnosis, harassement of family members of participants, money issues).

We have threatened them with legal action if they went ahead with their plans to expand to Spain (they already had a Spanish speaking person hired to do so and had set up several workshops in the Canary Islands which they had to cancell after our threats). We also, last year, informed all Spanish ME, FMS and MCS associations of LP and warned them to stay away from them."Clara Valverde, President LIGA SFC, email to 25%Group 20th Aug 2010

As Aylwin Cathpole (http://meworld.wordpress.com/2008/11/27/the-lightning-process/ ) points out :

"How could a three-day ‘process’ cure anyone of the catastrophic effects of ME on the immune system, cardiovascular system, endocrine system, brain injury, mitochondria) dysfunction and multiple co-infections? The Lightning Process is little more than a pyramid-selling style money scam with many of the hallmarks of a cult."

One of the hallmarks of a cult is thought control . As the 25% Group point out the LP is clear that it aims to get people to "think very differently."

Singh (1998) describes how "thought reform programs can be distinguished from other social influence efforts because of their totalistic scope and their sequenced phases aimed at destabilizing participants' sense of self, sense of reality, and values.

"Thought reform programs rely on organized peer pressure, the development of bonds between the leader or trainer and the followers, the control of communication, and the use of a variety of influence techniques. The aim of all this is to promote conformity, compliance, and the adoption of specific attitudes and behaviors desired by the group. Such a program is further characterized by the manipulation of the person's total social environment to stabilize and reinforce the modified behavior and attitude changes."

Another name for thought control or brainwashing is coercive persuasion, a psychological force which as Singh points out can be even MORE effective than pain, torture, drugs, and use of physical force and legal threats.

The 25% Group believes that the LP " essentially involves potential participants in signing up to a belief system." However Singh would argue that the thought -reform process is actually much more sinister than that : coercive persuasion is not a religious practice, " it is a control technology. It is not a belief or ideology, it is a technological process. ITS REPREHENSIBILITY AND DANGER IS THAT IT ATTACKS OUR SELF-DETERMINISM AND FREE WILL."

John Dewey calls coercive persuasion "psychological assault"

I can think of no better term to describe the campaign of denial, the forcing of people over the years - even to their deaths, like Sophia Mirza, into punitive psychiatric therapy programmes, to change their " maladaptive thinking" that they are genuinely ill, the chronic neglect and isolation of the most vulnerable and the most sick , that so characterizes official policy towards people with ME.

So many millions have already been wasted , still nothing is being spent on proper biomedical research : and now even more hundreds of thousands of pounds are going to be thrown away upon the useless ongoing practice of pseudo-science in ME.

Kahil Gibram said of our children :

"You may give them your love but not your thoughts, for they have their own thoughts." if a child with ME thinks she is ill, she IS ill !! There is no need for the Lightning Process , but every need for proper biomedical tests and treatment to be developed and to be made available on the NHS.

End of story.

That is the message that AfME has so failed to deliver. As Bayliss states : " Enough already, the time has come to sadly disassociate with ..AfME and other appeasers – they are part of the problem not the solution."

Hit the BANKERS not ME !

What kind of a society are we becoming ? Right across Europe it's the sick, the poor, the vulnerable, who are being made to pay for the sins of the bankers. Again I ask , where's the outraged voice of ME ??

Greg Crowhurst, July 1 2010

Permission to repost

"Then they came for the sick and disabled ....... " Twisted Witch

Just a little while ago , before the election :" Steve Webb, Liberal Democrat work and pensions spokesman, commented in relation to the Government's Welfare to Work programme : "The rhetoric sounds great – 'We're going to focus on what you can do and not what you can't do' – but we all know that what that really means in practice is getting tougher and setting the bar higher." He adds: "What worries me is the idea of a future Tory government going further, faster down this track and already budgeting for millions of savings, saying there's obviously people who don't need this money.". How ironic !

Only today , out of desperation, I posted this comment in relation to the Coalition's welfare policy : " All I can see are the Lib-Dem's nodding heads ; as what little of my sanity that is left, starts to crumble. God knows how we are going to cope ."

With little protest , the previous Government's Welfare to Work programme,a mere walk in the park, surely, compared to what the Coalition are currently considering, found seriously ill people, people with debilitating conditions and serious disabilities , even those with Severe ME, illegible for Employment and Support Allowance (ESA), the benefit that replaced Incapacity Benefit in October 2008. This is because they had been subjected to the notorious Work Capability Assessment (WCA) which took little account of variable symptoms, generalized pain, exhaustion or the underlying seriousness of a person's condition.

The WCA " contains a series of questions, called "descriptors", that relate to physical and mental functions, and from which claimants score points. The test fails to include questions relating to energy, stamina, illness and malaise. Instead, it focuses on specific physical functions, such as reaching, bending and continence. " writes Melissa Viney

According to a Citizens Advice Bureau report , those seriously ill and disabled people , found fit for work under the last Government and denied ESA , were subsequently written off, just left to cope with greatly reduced benefits on Job Seekers Allowance and little support. (Source : Not Working . CAB Evidence on the WCA.)

Yet introducing ESA and the WCA in 2007, Peter Hain, described them as "A new, progressive vision for our welfare system ."

This extraordinary counterintuitive reasoning has its roots, says Jonathan Rutherford in the American right's philosophy that the poor are the cause of their own poverty because they fail to take advantage of the opportunities "available" to them..

This all began in 1994 the Conservative Government brought in UNUM, the giant American Medical insurance Company, to advise them on welfare reform, a member of that group was Mansel Aylward, who in 1999, as Chief Medical Officer at the DWP, devised the new Personal Capability Assessment (PCA), contracted out to the American Corporation Atos Origin, where the " emphasis was no longer on entitlement, but on what a person is capable of doing."

The intellectual basis behind the PCA was UNUM's "The Scientific and Conceptual Basis of Incapacity Benefits ", written by Mansel Aylward, which is based upon the biopsychosocial model of illness, designed to "liberate" the disabled from the " medical model" . According to the biopsychosocial model, under which untold tens of thousands with ME have suffered previously, " Disease is the only objective, medically diagnosable pathology. Sickness is a temporary phenomenon. Illness is a behavior social phenomenon rather than a health problem. The solution is not to cure the sick, but a "fundamental transformation in the way society deals with sickness and disabilities. "

The transformation was this : " Sickness is a social and cultural phenomenon rather than a health problem. The solution is not to cure the sick, but to transform the culture of welfare. No one who is ill should have a straightforward right to receive benefit.", the " extreme agenda " which has been adopted by former banker David Freud, now Parliamentary Under Secretary of State at the Department for Work and Pensions.

Pushing the neoliberal agenda to triumphant heights, the new Government says the "only" way to save money is to slash welfare spending. It wants to wants to cut incapacity benefit , the employment and support allowance, cap housing benefit and subject all those on disability living allowance (DLA) to strict medical examinations. Effectively as many claimants as possible must be bumped off benefits.

To prepare the ground, the Disabled have been thoroughly demonized; labeled even by the Prime Minister as "Scroungers"; and the need to reduce " welfare dependency" is being shouted out , as loud as possible, to all who can hear.

And this is not just happening the UK . As Naomi Klein points out the G20 : "Faced with the effects of a crisis created by the world's wealthiest and most privileged strata, they (the G20) decided to stick the poorest and most vulnerable people in their countries with the bill."

Dan Tanzey asks : " How much more will the poor and powerless be expected to pay for a crisis created by the rich and powerful?"

Klien comments : "Already, workers, pensioners and students have taken to the streets against austerity measures in Italy, Germany, France, Spain and Greece, often marching under the slogan: "We won't pay for your crisis." Mothers in Romania and pensioners have taken to the street to demonstrate against Benefit cuts, a " a diverse mix of union members and community activists, parents and children and people of all ages have been out protesting in New Jersey against budget cuts."

As Klein argues, why should any of us take orders from the G20, an " ad hoc institution with none of the legitimacy of the United Nations" ? Right across the world it is the poor who are being made to pay for the banking crisis. In Spain , a striking civil servant asked " Why should hard-working people like us pay for the mistakes of bankers?" As the Daily Mirror asks " Do we just sit there and nod politely as we’re told that nearly one in eight public sector jobs will be axed over the next five years? Since when did taking 725,000 people off the wage bill to toss onto the benefits bill make any kind of economic sense? Soaring unemployment will destroy ­families and communities, but it won’t help fill the economic hole we’re in."

As Fred Shipman points out : " It needs to be emphasised that it is not the public sector which has caused the deficit but the irresponsible activities of the bankers and speculators of the private sector."

It is certainly not people with Severe ME who have caused the Economic Crisis and they should not have to be lying this day, as many are, in fear and trembling.

Bishop Tutu once said " I am not interested in picking up crumbs of compassion thrown from the table of someone who considers himself my master. I want the full menu of rights. " . Denied even the basic right of proper medical care for decades , under the biopsychosocial regime that has now gone global, people with ME know more than most, how evil that regime is. Are they just going to sit there and nod politely while even what little they have left, their benefits are stripped away from them ? Sadly, judging from from the deafening lack of response by all the main ME Charities to the proposed welfare cuts , that is exactly what is going to happen.

References:

  • Twisted Witch : New Statesman May 2008 http://www.newstatesman.com/politics/2008/05/work-benefit-claimants-reform
  • Greg Crowhurst Joe Public Blog , The Guardian, June 30 2010 http://www.guardian.co.uk/society/joepublic/2010/jun/30/incapacity-benefits-reform-scared
  • Melissa Viney, Bending the Rules, Guardian , October 28 2010 http://www.guardian.co.uk/society/2009/oct/28/work-capability-assessment-incapacity-benefits
  • Citizens Advice , Not Working , 2010 http://www.citizensadvice.org.uk/not_working
  • Peter Hain, Labour & the Sick Note, New Statesman, 27 Nov 2007 http://www.newstatesman.com/politics/2007/11/work-benefit-welfare-tories
  • Jonathan Rutherford, E pluribus Unum, The Guardian 17 March 2008 http://www.guardian.co.uk/commentisfree/2008/mar/17/epluribusunum
  • Jonathan Rutherford, The welfare reform bill’s hour of need, The Guardian 22 June 2009 http://www.guardian.co.uk/commentisfree/2009/jun/22/welfare-reform-bill-mental-health
  • Naomi Klein , Let’s take no orders to slash and burn from this G20 Club, The Guardian 29 June 2010 http://www.guardian.co.uk/commentisfree/2009/jun/22/welfare-reform-bill-mental-health
  • Dan Tanzey, Letters, Work, Welfare and Budget cuts, The Guardian http://www.guardian.co.uk/business/2010/jun/30/work-welfare-and-budget-cuts
  • Romania’s Mums protest against Budget Cuts, Euronews, 1 July 2010 http://www.euronews.net/2010/05/18/romania-s-mums-protest-against-benefit-cuts/
  • Financial Times http://www.ft.com/cms/s/0/2e2fe6f6-633a-11df-99a5-00144feab49a.html
  • BRUCE SHIPKOWSKI Thousands Rally In NJ Against Budget Cut My Fox, New York, http://www.myfoxny.com/dpp/news/local_news/new_jersey/Thousands-Rally-In-NJ-Against-Budget-Cut-20100522-apx
  • Fred Shipman, The Poor should not have to pay bankers’ gambling debts, 17 June 2010 The Argus , http://www.theargus.co.uk/yourargus/letters/8225652.The_poor_should_not_have_to_pay_bankers__gambling_debts/

www.stonebird.co.uk : The Lived Experience of Severe ME

Where's the ME Charities ??

Where 's ME ??? Learning Difficulties , Autism, Mental Health, seemingly every big charity have issued a Budget response already , strongly condemning the plans for Welfare Cuts and DLA .

Greg & linda Crowhurst, June 22 2010

But where's the outraged voice of ME ??

Come 2013 and if you are a Severe ME sufferer claiming DLA, you will have to undergo a (disdainful ) encounter with a medic who has not the faintest notion of the complex neurological disease that is Severe ME ; it's going to be called a readiness to work assessment.

How can continuing to deny the reality of the physical illness that is ME and how can the ongoing refusal to biomedically treat ME, be expected to get anyone back to work ? Continually hounding people with ME to jump through hoops to prove they are ill, is not going to ready them for work.

If Osborne 's preposterous Welfare plans are not challenged, starting today, the cost to the severely affected is going to be unspeakable.

When they cannot see people normally, when they cannot live in the real world because the environment is so hostile to their bodies, when they cannot process information and when any stress is likely to lead to worsening symptoms, never mind the post-exertional impact ; how can those who have the nightmare that is severe ME , be expected to undergo all that a back -to -work assessment would entail ??

Surely people with Severe ME should be exempt from any readiness to work assessment and surely the ME Charities should be shouting that out tonight ?

The silence, though is deafening. Where are the ME Charities anyway ??

Who is really speaking up for people with Severe ME ? Who is really making an impact ? Who is being listened to ?

How can we possibly be heard if the people who say they represent ME are not yelling out that George Osborne's Budget is not only unjust; it is dangerous for people with Severe ME ?

And where is the Coalition's promise to protect the poor in this persecution of the very sick and disabled ?

All the "Hooey"

Lying in bed, late last night, Linda sobbing in too much pain, in far too many parts of her body to cope with, I reflected upon that MEA Survey, with my blood boiling.

This is serious suffering going on here, and there is only me and my arms and my not knowing what to say after 17 years of relentless and deteriorating hell. And now the MEA have put out a document, entitled "Managing my ME" - a title that immediately made my toes cringe, a document which eases itself down, with a contented sigh, so smoothly, so comfortably into the NICE / Psychiatric paradigm, give or take one or two tweaks, don't you know.

You have to wonder, does anyone else inhabit the world of ME that I do ? Inhabitants of ME-land don't mention the "M" word at all, they are far too busy on their lonely quest, turning over rocks in the baking, blinding heat, trying to unearth some, any kind , of a test or a treatment; anything, that might help. God knows.

They are far too tired , their backs are whipped, are aching, from writing and writing and writing and meeting and meeting and meeting , with their local Health Authorities. Dealing and dealing and dealing, over and over again, with all the hooey; the kind of hooey, at least that's my opinion, that the MEA have just put out.

The hardest thing to deal with here in ME-land ? This pretense of doing something for you- be it advocacy, service delivery, needs assessment, leadership, when in fact your AFME's your MEA's , your PCT's are offering you zero, zilch, zip, zippo, zot...nothing !

Nothing because it's not relevant to us in ME-land, it's not relevant to this disease that I am having to deal,as a carer, with every second of every year, year on end. It's certainly nothing to do with the price of fish, however it's a lot to do with maintaining the status quo.

I can barely bare to sit and type this without recourse to profanities : the STATUS QUO !!! The demented, twisted, inhuman, manipulating, hopelessly corrupted, evil that has left my Linda crying in bed last night, suffering without hope of a cure or treatment for 17 long years and has driven me deep into the gut-churning, screamingly awful, maddening desert I find myself stranded and sinking in.

How the hell am I going to get Linda and myself out of here ?

It's open and shut . The only way out is through money, power and influence. None of which I have. So, okay, I've written the next Harry Potter (I have - and it's out with prospective publishers now)... it's back to the wall here and I'm doing what I can; but hey I'm beginning to run out of ideas here.....

The ones who DO have the money, the power, the influence, the AfME's , the MEA's ; can you possibly imagine a world where they were representing people with ME ?

Me neither .

A Response to "Managing my ME"

This survey is hugely disappointing, because it still perpetuates the myth that management is all that people with ME need; if only it was done better.

Greg & Linda Crowhurst

28th May 2010 : Permission to Repost

The Survey just does not ask the correct questions :

  1. do you want a Biomedical service ?
  2. do you want specific Biomedical ME tests not currently available ?
  3. and do you want real Biomedical treatments,rather than therapy, charading as
    treatment ?

The Survey does not adequately reflect that there is an alternative path to the current psychosocial management approach; the biomedical path. This is even reflected in the unfortunate tile of the survey, which is already validating a "management "approach, right from the beginning.

There are no apparent new options or innovative questions in this survey.

Where was the question asking if people want better ME biomedical testing , currently not available on the NHS ?

Where was the question that raised the point that there might be biomedical treatments available , if only the NHS would provide them ?

We know there are mitochondrial and pesticide tests. Why weren't they included as a possibility for people to say they want ? Where was the question “do you want proper brain scans, such as PECT and SPECT, which would show brain dysfunction ?”

Did the survey ask people what definition they want to identify their disease ?

Did it raise awareness that the Canadian Definition should be an option as opposed to the vague, Oxford and Fukuda criteria ?

Although the questionnaire asked who diagnosed you, it didn't ask whether the Doctor believed it was a physical illness. This is key to finding out who has ME and who has Chronic Fatigue. This is vital information which would highlight who specifically is answering the questionnaire and would verify its validity as truly representing people with ME.

Did it address the needs of the severely and very severely affected ? Not in our opinion.

The survey concluded that the Severely Affected found it difficult to impossible to complete it , even though it could have been done in stages. So how are the severely affected supposed to make their needs known ?

There were no questions specifically geared to the severely affected, despite the fact that the current management regimes are failing them badly.

Most of these questions would not be relevant to the most severely affected, who cannot get to clinics, cannot participate in group sessions, cannot even undergo a pacing regime, because they do not have enough functional ability and are desperate for medical treatment, not management.

When it came to symptoms, the survey did not raise any of the more serious symptoms that are characteristic of severe / very severe ME, which again indicates that it was not geared towards the severely affected.

How can it be that those who are most ill, most neglected, most dismissed and least helped , with such dire and severe , sometimes life-threatening and deteriorating symptoms, were not adequately enabled to have a voice through this questionnaire ?

This survey claims to be a definitive document about the needs of people with ME. Yet the more extreme experience of ME is not represented enough in the questions, we feel.

The most important result of the questionnaire , we feel, is that CBT and GET are not effective or wanted. This confirms every other previous survey.

Our main concern is that the survey accepts the management approach, with no emphasis in the questions upon a fundamental change in possible service provision and attitude.

There is no question that asks whether people are happy to be treated with rehabilitation techniques without any proper ME -specific tests and treatments , for the underlying causes of their illness; which is the current NHS position.

It is a travesty, we feel, to call this Survey “Managing my ME; it sounds more like managing to ignore new possibilities.

It is time for a change to the management approach.

Management is rehabilitation , which is bizarre given that the underlying illness continues to go ignored, untreated and avoided.

The title implies agreement with the management approach, yet rehabilitation in general, comes after an illness has been treated – just not in the case of ME. There is no way of knowing whether somebody has recovered enough to engage in rehabilitation techniques, so how can a management approach be the correct focus ?

This is a shame because it could have been an opportunity to really challenge the current lack of proper biomedical service provision for people with neurological ME.

The survey failed to really raise the issue of the need for proper diagnostic criteria, which would clearly separate once and for all people with ME from people from Fatigue .

It could have been an opportunity to look with fresh eyes upon the whole of ME service provision and ask people to comment on the lack of a biomedical approach in the UK. It's an opportunity disappointingly missed.

"Managing my ME" does not begin to address the real need, which is a biomedical service for all.

Reclaim your Power !

You don't need to tell an ME sufferer about what Barry Lynn calls "The Economics of Destruction" .

About how corporations :

control governments, the courts, war and peace, dominant information sources, and essential services, including health care, air and water, what we eat and drink, where we live, what we wear, and school curricula to the highest levels. They own genetic code patents, basic human life elements to be commodified the same as toothpaste, tomatoes or toilet paper.
Omnipotent, they plunder recklessly, ruthlessly at our expense. They're private tryannies, endangering humanity, basic freedoms, environmental sustainability, and planetary survival. Without exaggeration, they're unaccountable, unchecked "weapons " of mass destruction."

ME patients know intimately the tyranny of the Health Insurance Industry; how it has fought relentlessly for decades to deny that their disease is a physical illness.

ME patients know all about danger ; many have been abused, many have died as a direct conseqence of this corporate manipulation .

ME patients do not know " basic freedoms" their basic freedom to be receive equal treatment has long been buried under the likes of the Oxford Definition.

" Weapons of mass destruction"?? see it written in their pain-wrecked bodies, their numb paralused hands, their endless suffering.

Under New Labour the NHS has suffered from "creative destruction." As the Green Party states :

Since 1997 the health gap has widened. Infant mortality rates, one of the best indicators of health, between the rich and poor are getting wider and wider7 - why is this not a national scandal - why is this not front page news time and time again?
There are over 40,000 premature deaths each year in the UK due to just two air pollutants8 - Ozone and PM 2.5. These are mostly attributable to traffic. On the email lists there were slogan suggestions, one of which was 4WD=WMD - how utterly true that is. 40,000 premature deaths each year... no action taken. We have our own WMDs and they are being ignored.
Childhood obesity is rising - kids are getting driven to school so that if they don't die of an obesity related problem, then the air pollution will surely get them. School meals came in for a high profile campaign so what did the government do...? For the first time ever life expectancy is beginning to fall - because of the childhood obesity epidemic.

The companies that have been brought in, under New Labour to run the NHS , points out John Pilger, include :

the US companies UnitedHealth, Aetna and Humana. These totalitarian organisations have been repeatedly fined for their notorious role in the American health-care system. Last year, UnitedHealth’s chief executive, William McGuire, who was paid $125m a year, resigned following a share-option scandal. In September, the company agreed to pay out $20m in fines “for failures in processing claims and responding to patient complaints”. Aetna has had to pay $120m in damages after a California jury found it guilty of “malice, oppression and fraud”

And, of course, that bane of ME patient's lives : Unum. Margaret Williams explains :

The case which is probably of most interest and relevance to the ME/CFS community is that of Dr Judy Morris versus UNUM (December 2002). Just before filing her lawsuit against UNUM, Dr Morris, an ME/CFS sufferer who can no longer work in the field of Accident and Emergency (ER) medicine, attended a conference in Boston and spoke to Dr Mike Sharpe in person, having found out that it is Sharpe’s research on “CFS” which UNUM uses to support the view that CFS is a psychiatric condition and upon which UNUM relies to support the contention that psychotherapy could effectively cure it. She told Sharpe that his research was being used by UNUM to deny CFS claims. Later, she received an email from Sharpe telling her that UNUM’s employees were not the monsters she was making them out to be, whereupon she wrote back asking him how much UNUM paid him for his “in-service”. He did not reply.
Dr Morris, on her own, obtained two further opinions from experts about her condition, one of whom (Dr Richard Glew, an infectious diseases specialist) concluded that Dr Morris certainly is unable to pursue full-time, high pressure ER work.

Unum , of course, as ME patients know only too well

has been one of the leading forces in trying to make it harder for people to be signed off sick by their GPs. Staff from UNUM were also prominent in the design of the current Personal Capability Assessment and also the new, much harsher Work Capability Assessment. Professor Aylward is, in addition, involved in research for the DWP and for Dame Carol Black, proponent of the replacement of sick-notes with ‘well-notes’.Johnny Foreigner

As this commentator states Unum:

in the UK, in addition to some of its commercially orientated innovations e.g. Pathways to Work, its Bio-Psycho-Social model, provider of Exclusive Training & Certification of OTs /Government Approved Assessors and "Simply Unum" its HR/Time & Attendance Software; this infamous "outlaw" branded Tennessee based insurance company now re-branded a "Rehabilitation Specialist" Org. has greatly influenced UK government legislation to help produce and push what appears to be self serving "radical" reforms of the British welfare system, national social policy, certain NICE Guidelines, assisted in successfully re-classifying particular physical medical conditions into "mental illness" or behavioural problems [with the prospect of additional serious physical diseases to follow "its all in the mind" academic theory], supported suggestions [which have clearly been taken seriously] that talk therapy (a.k.a. Liaison Psychiatry) and "work" or GET can help individuals unfortunate enough to be truly mentally ill, reforming British medical education and the NHS.

So now this historic UK Election has happened and the country is hungry for revolution. This afternoon protesters, trying to claim back parliament , will be out on the streets . The colour is purple.

I wish I could join them. Tens of thousands of ME patients and their carers remain hidden, locked away, out of sight. I cannot carry on like this, I cannot live any longer with this injustice. In my own way I will keep fighting. Today I will wear purple, in solidarity.

On the eve of the UK Election :

A  Manifesto for the ME Party .

Greg Crowhurst 5th May 2010

 

(Permission to repost)

Our circumstances are largely driven by the eroding of facts about ME through the clever use of language and the compromising of truth; miles away from any hope of proper research, treatment and a cure.

Why do you have to endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in your neurological symptoms?

Why do you have to endure inappropriate therapeutic techniques, for your serious physical disease, as "treatments"?

Why do you have to endure the denial of the WHO categorising of your neurological disease in the NICE guidelines and the promotion of a biopsychosocial approach to your disease, when it is not a mental health illness?

Why do you have to endure a complete lack of biomedical ME clinics and this dearth of biomedical ME clinicians ?

Why do you have to endure no government backing for physical ME research?

Why do you have to endure lobbyists and psychiatrists who have vested interests in insurance companies being allowed to be advisors to the DWP regarding guidance in your illness?

Why do you have to endure psychiatrists being allowed to inaccurately define your disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME?

Why do you have to endure the psychiatric lobby getting away with changing the name of the disease from ME to CFS to ensure this wrong focus?

Why do you have to endure the neurological nature of this illness being dismissed and the people who have serious neurological symptoms being denied a proper service because of that?

Why do you have to endure inappropriate therapeutic techniques being promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially ?

Why do you have to endure the vast array of unending ME symptoms , the fact that there are no drugs to alleviate them because the Government has wasted millions of pounds upon pointless psychiatric research ?

Why do you have to endure the isolation caused by people , both medical, official and in society including families, who do not understand this ME is a serious and severely disabling physical illness ?

Why do you have to endure living in fear that you will not get your benefits ?

Why do you have to endure having to accept you will get wrong treatment or poor treatment or no treatment for your ME ?

Why do you have to endure knowing that you are physically ill but here is no appropriate treatment for you and there is not going to be unless the untruths pedalled by the psychiatric lobby are drowned out and shown to be false ?

Why do you have to endure knowing that there are few clinicians if any who can actually help you ?

Why do you have to endure knowing that you have not had proper biomedical ME tests and that you are not going to get them even though there are tests that could be done ?

Why do you have to endure the psychiatric lobby downplaying this serious neurological illness , saying it is a mental health issue and that no research or tests are necessary ?

Why do you have to endure knowing that you need a proper diagnosis and medical assessment but if your GP or clinician or benefit agency doctor is psychiatrically oriented you are simply not likely to get the right help and support that you need ?

Why do you have to endure knowing that as your neurological symptoms worsen that there are no neurologists who are willing or interested to help you ?

Why do you have to endure knowing that going to hospital for tests is most likely a waste of time and energy and will lead to disappointment because they will not do the right ME tests ?

Why do you have to endure knowing that if you need drugs for some other condition they may well react badly because of your ME so you do not know if you dare take them , yet there is no Consultant to advise you or your GP ?

Why do you have to endure knowing that the psychiatric promotion of the biopsychosocial approach is wrongly influencing doctors and nurses who may have to treat you one day and will not understand how very ill you are and will not therefore understand how to treat you properly ?

The ME Party would immediately begin to unearth the conflicts of interest of industry sympathetic groups that perpetuate the needless suffering of ME patients.(Walker 2008).

The ME Party would immediately cease all negotiations and wasteful Government involvement with the Wessely and associated Schools of Psychiatrists ,Therapists and “Quack Busters”. To argue science with them is like arguing reality with Alice in Wonderland as she falls through the looking glass. (Walker 2008)

The ME Party would seek an international agreement to end the destructive global practice of "policy " – based medicine usurping "evidence" - based medicine.

The ME Party will not tolerate the ongoing corporate takeover and denial of ME any longer and will put an immediate end to the corporate –led health care system that is being introduced rapidly into the UK, against a background of increasing social control and state repression.

The ME Party will cease all funding to any patient representative group that has formed a partnership with those that deny ME exists.

The ME Party will establish an independent scientific committee to oversee all aspects of ME research with full backing and make full funding and backing for XMRV research a priority. (Clegg 2010)

…..oh and .the immediate reinstatement of Sarah Myhill, the complete dismantling of NICE…

Members of the ME Party are currently occupying the GMC, MRC, Kings, Barts, NICE.....(cf Phillips 2010)

All of us, can and must dream .

References

Clegg N (2010) in Greensmith J (2010) Open letter to Esther Rantzen, when Independent candidate for Luton South, on behalf of the M.E. Community Co Cure 4 May 2010.

Phillips T (2010) Battling for the powerless ordinary citizen Eastern Daily Press, May 1 2010

Walker M (2008) Cultural Dwarfs and Junk Journalism . Slingshot Publications, London

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Screaming

Greg Crowhurst , May 2nd 2010

Days when I could travel to see my widowed mum, days when I could go to a meeting, a conference, chair a meeting, be at a meeting, get on a train, go on a bus; those days .Those days are gone , are behind me now.

Nowadays , each day gets narrower. Decreases in width to the length of a garden bench, if one is lucky , or to a chair arm, where you sit perched , your arm around your loved one. Feeling her muscles tense , like wire, with pain and suffering. This is what I am talking about now.

Now here is what the Health Authority have just sent out, here is their vision , hot of the press, for a "CFS/ME" service :" The main symptom of CFS/ME is a feeling of unusual and excessive tiredness" . You can guess what follows next : " There is now good evidence for management strategies such as activity management, which enable people to control and improve their fatigue levels. This is done by addressing how energy is used and managing other factors which impact upon fatigue. Also it is useful to use strategies to control debilitating symptoms."

As if I and others in the Region have not uttered a word these last five years about the fact that ME is a WHO neurological disease. As if I was not once the Regional Patient Rep Chair , as if I have not written countless letters to the newspapers, my MP and the Health Authority , as if I have not sat down with them and physically shown them videos of my wife's suffering, as if I haven't pleaded with the Chair of the Health Authority and the Chief Medical Director in person , before it is too late, for biomedical tests and treatments for ME, as if I didn't spend so much precious time, over the years, at so-called "Consultation" meetings.

When I see my wife this ill, I know that this is the heavy cost that we have had to pay for my "activisim"

But as if none of that has happened, here, regardless, comes along this "CFS/ME" Service Plan. Same old, same old plan which has been there all along , same old plan that was drawn up in the first place without any patient consultation, same old plan which we have fought against all along and which is now to be rolled out across the entire Region.

Here's the thing : they want us to comment upon it .

Now there comes a time when "consulting" turns to "insulting" and that time is now.

What more can I do, than sit on this bench, on a beautiful sunny day, when we could be doing so much, my wife in tears with pain, than scream inside.?

Screaming is all I have left now..

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ME Activism in a post-NICE World

Greg Crowhurst

"Working on it day after day, all the time, that's hard, and that's important, and that's what changes the world . "Noam Chomsky

NICE was published over the heads of a weak and ineffective patient's movement. Skewed, misinformed, wrong and dangerous ; it is extremely difficult to read the Guideline without an overwhelming sense of anger and despair ; it has no relevance whatsoever to people with ME.

Before NICE the (UK) ME community could have made a real difference, if it had not been so split by pointless point-scoring on the Internet.; by vicious attacks on those who have the guts to try and make something happen.; by obsessing over details that don't matter.

One click of a mouse and an activist silenced , a spirit crushed, a campaigner in shock.

Divided, deeply polarised along ideological lines, infiltrated and taken over by blatant vested interests, the ME community has been in no fit state to mount any effective campaign. Post NICE , ME activism must become much more united, focused, serious, disciplined.

The issues facing ME sufferers are profound and complex. Perhaps the words of Afghanistan MP Daoud Sultanzori (2007) also apply to the invasion and take-over of the ME world by the psychiatric lobby : " ..they conduct themselves one inch lower than the clouds. They are not in touch with the real problems..they become their own problem ." Daoud Sultanzori's (2007) , MP for Ghazni Province , Afganistan , The Guardian, Aug 29 2007 p.21).

The seriousness of this flaw, as Kevin Short (2007) states , cannot be overemphasized : "In taking such a path, the NICE process has participated in a monumental affront to international research science, clinical findings and patient experience: the supposed three foundations of modern 'evidence-based' medicine. It represents a thinly disguised case of 'policy-based evidence' usurping 'evidence-based policy'. The NICE/York literature review amounts to nothing short of professional misconduct and fraud: fraud that is based upon unscientific and deliberately fudged patient selection criteria and replete with vested interest.

Could anything be more complex, more profound , more important or more uneven, than the struggle we face as ME activists in the UK ? ME is an easy target and just about everything, including the media, is stacked against us.

The temptation is almost always to deny or resist any struggle , but this is not an option . Things are only going to get much, much worse; as Short points out : "reassurances that lack of 'optional' patient submission to CBT/GET and de-facto labelling of the illness as psychiatric will not affect access to welfare benefits need to be taken with a very large pinch of salt. The inexorable and incremental conveyor belt of Unum- Provident's / New Labour's 'Pathways to Work' gathers pace. Developments at the NICE need to be seen alongside the recent, and equally disgraceful, NHS-Plus Occupational Health and DWP guidelines on 'CFS/ME'. The totality of these measures will ultimately lead to patients being effectively mugged for their state and insurance benefits - as well as being denied proper medical assessment and treatment. "

"There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things" Machiavelli wrote in 1532, It is truly amazing just what can be achieved by those activist groups who believe in themselves; who can overcome self-doubt and who can maintain a consistent focus. In the meeting rooms of Primary Care Trusts (PCT's) and Strategic Health Authority's (SHA's) up and down the land, ME activism is taking place; but it is far too fragile and patchy, still ; not helped by the extraordinary infighting and negativity that tears so many groups apart. Patient empowerment and awareness-raising are key.

Truth is on our side; we have overwhelming evidence to back-up our simple quest ; to get ME treated as the physical disease it is, not as the mythical psychiatric behavioural disorder that the insurance industry would dearly like it to be.

It is chilling to think how much worse the NICE Guideline could have been if there had been no Gibson Inquiry ( sadly so wasted by the ME Community) . It is not nearly enough, but we are making progress.

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Check out the facts

Greg & Linda Crowhurst

A UK debate is raging right now that has profound implications for the whole ME Community. To what extent should we accept the psychosocial model , because the biomedical model is not being advocated for, developed or created by mainstream medicine?

This issue can only be tackled, we suggest, by taking a step back and looking at the wider picture; the concept of death-making is a particularly useful framework from which to begin.

Death-making is concerned with society's potential to bring death not life to those it does not value, This includes the unwanted unborn, unwanted children, people with a disability, the poor, prisoners, street people, native populations, the elderly, the contagious, the chronically ill, the terminally ill; any group of people that is perceived as a threat or that has been demonized.

Any practice, action or thought that considers a person to be less than human, less than valid, less than equal, is potentially a death-making one.

People or groups that society do not value often
suffer the "wounds" of being regarded as:

  • Non human
  • A menace / object of dread
  • A threat to the norm
  • Waste material, garbage, discard,
    excrement
  • Not be taken seriously
  • Invalid
  • An object of ridicule
  • An object of pity
  • A scrounger, malingerer hypochondriac, manipulator, user.
  • Childish, immature, irresponsible ,unreasonable, demanding
  • Better-off dead
  • An economic / emotional burden
  • A waste of space.

cf. Wolf Wolfensberger (1994). The Growing Threat to the Lives of Handicapped People in the Context of Modernistic Values, Disability ; Society, 9(3), 395-413.

A notorious example of death-making was the Nazi's putting to death of sick and disabled people in German killing centres , as an "act of mercy", the lebensunwerten Leben; the "life unworthy of life".

Their life is absolutely pointless..They are a terrible, heavy burden upon their relatives and society as a whole. Their death would not create even the smallest gap--except perhaps in the feelings of their mothers or loyal nurses." argued Law Professor, Rudolf Binding and Professor of Medicine, Alfred Hoche at the time, echoing sentiments that date back as far as Plato and are very prevalent today..

All of this took place against "a background of pernicious nonsense masquerading as legitimate scholarly research ..the unimaginable had occurred; physicians were being encouraged, not to save life, but to take it."

Shockingly the doctor-defendants who were involved in this Nazi death programme never expressed any regret at Nuremberg after the war, nor did they deny their actions. They argued that they were following lawful orders and that in the euthanasia program they were motivated by the desire "to solve an old medical problem."

This "bloody conclusion of Hegelian rational utility and pragmatic morality" began with one fatal assumption, wrote Dr Leo Alexander, a Boston psychiatrist at Nuremberg :

It began with the acceptance of the attitude basic in the euthanasia movement, that there is such a thing as a life not worthy to be lived." (Powell J 1981 Abortion : the Silent Holocaust, Argos Communications , Allen , Texas, p.34) ;

It is a concern that the UK psycho-corporate lobby's stance could be considered as a death-making one, when you look at the underlying messages and the impact upon people with severe ME.

For example recent research by the 25% Group, for the Gibson Inquiry, uncovered a shocking picture of severely physically ill ME sufferers being labelled as psychiatric patients, being treated with contempt by many GP's, doctors and nurses, being locked in secure units and shut in AIDS wards, being refused food and being forced to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing seriously wrong with them. and that proper physical testing should not be encouraged.

The psycho-corporate lobby continue to attempt to subvert the international classification of this disorder from neurological to behavioural; they have infiltrated all the major institutions, they ignore and misinterpret the biomedical evidence for ME (over 5000 research papers). and they continue to suppress the published findings .

It is clear that the psycho-corporate lobby are proceeding on the basis of a vague, put together sort of- an- illness- that- people- may- or ;may- not have, rather than the strict Ramsay ;defined truth of neurological / enteroviral ME.

Don't be misled by any organization who says they represent people with ME. Check out the facts.

Do ask the following questions:

  • Are they calling it Myalgic Encephalomyelitis?
  • Are they calling it ME/CFS? Or are they leaning towards a psychiatric definition?
  • Are they calling it Myalgic Encephalopathy?
  • Are they calling it CFS/ME?
  • Are they calling it CF?
  • Are they calling it Functional Somatic Disorder?

Currently we have a situation where anyone with fatigue is being given a CFS label, confusing the whole issue of who has ME and who does not. The psycho-corporate lobby says let us make it a syndrome rather than a disease, let us call it "CFS" and then let us bury the ME "needle" in a whole sea of undefined illnesses and limited symptoms; the CFS "haystack".  Let us bury the illness in a host of confusion and vague illnesses and then say we know how to 'treat' it using rehabilitation techniques.

Let us focus upon fatigue and those who might respond to Graded Exercise therapy and Cognitive Behaviour Therapy, even though those with true ME are saying that these practices will harm them.

If you actually have neurological multi-system enteroviral Ramsay-defined ME then you have to develop awareness of the current state of ME politics and treatment in order to stay safe. These are dangerous times for the truly physically ill ME sufferer, who is still being left to flounder often without any medical support or back up, monitoring or treatment., who may be given a wrong or minimised prognosis, will not have all the symptoms investigated appropriately and who will most likely struggle to obtain benefits and appropriate GP support.

In order to survive, you need to be aware of the whole list of your neurological / cognitive / autonomic / neuroendocrine / immune system malfunctions and then ask what symptoms are being focussed upon by those who treat / represent you.

Are they acknowledging that you have a :

  • disease?
  • Are they respecting your biomedical symptoms?
  • Are they using the Canadian criteria?
  • Are they recognising that ME can be deteriorative, severely disabling and can even cause death?
  • Are they advocating biomedical research?
  • Are they pushing for proper tests?
  • Are they using the Oxford criteria?
  • Are they excluding neurological symptoms from their definition of ME?
  • Are they focussing only upon fatigue?
  • Are they proposing a biopsychosocial model incorporating CBT/GET and a strict pacing regime?
  • Are they suggesting that ME can be managed?
  • Are they pretending you are going to get better even if you have been severely ill for more than 4 years?
  • Are they denying you have a physical illness?
  • Are they advocating a psychiatric approach?
  • Are they entering a mental health label into your medical notes?

Because the psycho/corporate lobby's truth is a relative one (to a political agenda), it can be infinitely flexible, so the goal posts can be constantly moved about by the corporate-psychiatric lobby and the real truth of ME perverted, especially by the brilliant infiltration of patient movements.

Be aware of the message those who represent you are conveying :

  • Are they independently and proactively standing up for the truth that ME is a physical , World Health Organization classified neurological disease?
  • Are they fully consulting with their membership?
  • Are they disseminating information that is up to date on current worldwide physical research?
  • Are they implying overtly or covertly that ME is wrong thought, wrong belief, hypochondria, somatoform disorder, mental health issue?
  • Are they being influenced by any vested interests or are they linked to any organization
    or individual with vested interests in maintaining a psychiatric paradigm for ME?
  • Are they attempting to undermine in any way the WHO classification and terminology?
  • Are they recommending dialogue and compromise with the psychiatric lobby, either overtly or covertly?

Unless you understand that Myalgic Encephalomyelitis is a neurological, multi-system disease, which is severely disabling and can be deteriorative, even to death, for which there is currently no treatment and no cure and unless you are aware of the eroding of this fact through the clever use of language and compromising of facts, then you are in grave danger of being misrepre- sented by people and organizations that will not truly represent your needs.

Does the truth of enteroviral, neurological ME fit into the CFS paradigm? No, it does not !

If you have enteroviral, neurological, Ramsay- defined ME, do you have deconditioning and fatigue? Not likely !

Do you have only 6 symptoms? No, more like 60 !

Is the psychiatric paradigm going to help your physical illness? No !

Is Graded Exercise Therapy going to help you feel better physically and get fitter? No it is the worse thing in the world for real ME !

Is a psychiatrist who does not believe you are physically ill, going to get to the bottom of your illness?

What benefit is a psychosocial psychiatrist in the treatment of ME? With their rehabilitative techniques masquerading as treatment.

Are psychosocial psychiatrists spreading the truth that ME is neurological ?

What is your personal experience of other medical professionals, under the influence of the psychiatric lobby? Have you been called a malingerer, a hypochondriac, accused of putting it on, been dismissed, told you only need encouragement? Have you been refused home visits, tests or treatments? It may not even be that overt.

If you have raging neurological symptoms you will not want a psychiatric service as your front line treatment option; that is for sure !/p>

The message to all ME organizations / associations/ representatives is stark:

  1. You need to step back from the minutiae of issues and see the bigger picture and look at the wholeness of your values, principles and intentions. What are they validating and standing for? Is there any congruence with the truth of ME? Are you acting with integrity or from a compromised truth /
  2. Do not start from a false position and then sell everyone short. You can convince yourself that you are being "fair", or "pragmatic" but in reality you are treading dangerously by denying the silent reality of the thousands who are far too disabled to stand up and speak out. Their reality should not be compromised just because they have been made invisible. Please do not make them invalid as well.
  3. Do not cloak the psychosocial issues in a cloud of false, irrelevant arguments, such as : "He / she is a nice person /Doctor / Nurse / OT"; "They mean well."; "It is all that is available" Services should not be about personalities or people. They are about real issues, values, attitudes and practices that either validate or deny the physical reality of ME.

You cannot compromise on the truth of ME, To do so, is to embark on a slippery slope downwards towards relativism and away from truth ; miles away from any hope of proper research, treatment and a cure.

In short there are only two ways anyone representing ME can go :

  1. Life-bringing:straight-street, laser-sharp, from the truth to the truth, with honesty and integrity at the centre.
  2. Death-making:slick, glossy, in an ever wider circular cover-up of denial and manipulation; and this begins the moment you compromise your values.

You simply cannot sit safely on the fence believing that you are being reasonable. There is no balance to be struck between psycho-corporatism and a true biomedical approach. People are dying right now from this illness.

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The Reality of Living with Severe ME

Linda A Crowhurst, Severe ME sufferer

The NICE guidelines on "CFS/ME"are shameful, they offer nothing to true ME sufferers.

ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that.

Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before.

I am never unaware of the range of symptoms that rage through my body , and are over ridingly dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the souls of my feet, the tip of my nose , my eyebrows even.

They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations that flow and ebb, expand and contract, and irritate beyond belief. My throat hurts, my eyeballs are swollen and itch , prickle, burn, throb , unceasingly,

My ears hurt to touch inside and out and noise, even a whisper can be excruciatingly loud and painful. Street noise, cars revving, doorbells, telephone, dogs barking,conversations at normal sound levels , all can torment me. The screeching sound of knives and forks on plates, the sound of people chewing even are exaggerated by my hyperacusis .

Any regular sound is intolerable such as a clock ticking, a newspaper rustling, a plastic bag being opened, or someone banging, a lawn mower ,a hoover send out devastating sound vibrations that I feel not only in my ears but in my whole body as pain. I become completely alienated from the world I seemingly and supposedly exist in.

I cannot bear to see people because they exhaust me with questions and conversation, with thudding foot steps, loud voices; they irritate me with their insensitivity and unawareness of my hypersensitivity, and hurt me physically - a hug or a pat on the back can be like a huge blow.

Light is intolerably bright, television and computer screens hurt my eyes, reading anything causes my brain to somehow overload so that I cannot receive or process information . Written or verbal descriptions both have the same affect. Letters jump around the page or make no sense or shape at all.

I stare a lot because it is too painful to focus. I say yes or nod when I cannot even understand the conversation because it is making no sense and my mind has become a fog of nothingness.

My head has a huge pressure on top with the deepest of throbs that incapacitates me completely physically and mentally. I often feel as if someone has driven a wedge down the centre of my head so there is no awareness inside it where I should be able to think perceive visualise imagine.

As I lie down I feel not only my head throbbing in unstoppable pain waves , but also my hands, my feet, my calf muscles, my face , my lips, my whole body is actually throbbing in unison.

As I lie down too weak to sit up any longer, my muscles spasming and seeming like jelly too insubstantial to hold my back upright, I find that I cease to function in even the most basic of movements. I cannot move my fingers. I cannot move my legs or my arms. i cannot reach the glass of water by my bedside despite i am gasping with thirst and my mouth is parched dry. My eyes are dry too, the tear film will not stay covering it so that moving my eyeballs is like rubbing them with sandpaper. Often it seems as if i am looking down a dark tunnel. I do not have full vision.

As I fall into sleep or near sleep mode my whole body ceases to move completely and totally. When I sleep I am still semiconscious for a lot of the time, the pain in my body penetrating my awareness or tormenting me with lucid dreams in Technicolor. In the deepest sleep I might feel innerly peaceful but then struggle to reawaken.

As consciousness arises I discover I cannot move my eyelids, I cannot open my mouth or speak to call out for help. My breathing is uneven and difficult with my diaphragm muscles struggling to move evenly and properly. My whole body pain has intensified to a vast degree . There is no possibility of movement of any kind. There is no response to any voluntary command to move. My whole body is an immovable throb of burning pain . My face has become palsied. Whole areas of my skin have become numb, particularly severe is my left side,: especially my left ear neck , face and arm, though sometimes oddly enough it switches so that my right side is worse. I have left sided head pain which is intensified greater on that side, for it is still present on the other side too. My lips are numb , my nose is numb , my eyeballs feel numb and grotesquely enlarged. I cannot even move my littlest finger let alone my hand. My feet are numb and my limbs are cold.

I lie like this with my bladder bursting, desperate to go to the toilet yet unable to call for help and unable to bear being touched or moved. Any attempt to move me will cause me to spasm and go into such agony that I cannot tolerate it. And so I wait. I wait and wait until touch becomes more bearable, till speech becomes possible, till fingers can be moved and limbs manipulated and knees will lock so that I can hopefully sit then eventually stand with support . The wheelchair waits but motion brings new difficulties. standing brings dizziness and black outs, Motion brings vibration and impossible irritation .

Once I have moved a little I may be able to move a little more, but the pain never ever goes away. It is constant in my life and everything I do is filtered through this experience of pain, numbness , muscle dysfunction and acute hypersensitivity. No activity or action is enjoyable physically.

There is no position that does not hurt.

There is no seating that is comfortable, the pain does not miraculously go or decrease because I lie down - I am in physical discomfort to physical torment every moment in every position.

On top of this general all over intense pain I have a damaged hip from a bad osteopathy experience, I have a damaged cartilage in in my knee but my body is too weak to be operated on and my drug and chemical sensitivity plus my sleep paralysis and breathing difficulties make an operation impossible, I have severe period pain, I have painful, tender to touch, throbbing guts and IBS type symptoms, I have a damaged lower back and recently I have hurt my shoulder.

I have food sensitivities and drug allergies, I have all over body spasms, i have dental work that I am too ill to have done, I have low level thyroxin, I have low cortisol levels. I have had severe anaemia for the last 2 years . I experience hypoglycaemia regularly. I feel ill all the time and I feel worse after minimal effort.

I have been told I have less than 20% functional ability at best and less than 10% at worst. I have a severe and chronic neurological disease that is> acknowledged by the World Heath Organization (WHO) at ICD10.9.3.

I am unable to manage without physical assistance and have to live in silence and stillness with very little outside contact. because i have such little energy and such severe symptoms. I regularly burn myself because i cannot accurately tell the temperature of hot things such as bath water, hot water bottles. i fall over often and bump into things because i have poor balance, poor spacial awareness and proprioception, poor coordination and I get dizzy.

My muscles simply do not work properly. I drop things. I often and daily cannot hold things, like knives. forks, pens, telephones, All my cups and cutlery need to be light or they hurt me to lift.

Standing is difficult and hard to explain why , unless you understand the orthostatic intolerance present in ME. My symptoms worsen after any exertion and I completely run out of energy and have to go back to bed.

Walking varies from completely impossible to severely limited . I have a wheelchair for indoor and outdoor mobility yet it is still often unuseable because of the complexity of symptoms I experience.

Although i live in a beautiful place I have never been able to walk to the village shop, the post office ,go cycling, go to the pub, the many restaraunts, the church services, the cinema, the theatre, go bird watching, go on the local sandy beaches, .

Having ME means you lose friends and it is virtually impossible to make new ones because contact is so hard to maintain and normal social events are a torment that become impossible to participate in.

You cannot join in family occassions or celebrations - and in the end people stop inviting you, they stop expecting you and often they blame you rather than continue to reach out in new ways to understand the illness. Holidays are impossible because of poverty, difficulty with travelling, unsuitabley hard beds, potential intollerable environmental noise, chemical sensitivity, and inaccesibility to everything.

Visiting others is another virtual impossibility because of multiple sensitivities and just feeling so very very ill al the time .Planning anything is utterly impossible because you never know from moment to moment what you can physically manage. and keeping appointments is extremely unlikely.

Why did I have to fight and complain about wrong assessments to get my home properly adapted? Why did I have to endure condescension and dismissal by a neurologist not interested in my neurological symptoms?

Why do I have to accept psychiatrist's recommending inappropriate therapeutic techniques as "treatments"?

Why do I have to accept the denial of the WHO categorising of my neurological disease in the NICE guidelines and the promotion of a biopsychosocial psychiatrically motivated approach to my disease, when it is not a mental health illness?

Why do I have to accept a complete lack of biomedical clinics and a derth of biomedical clinicians in dealing with my disease?

Why is there no government backing for physical research? Why are People who have vested interests in insurance companies allowed to be advisors to DWP regarding guidance in my illness?

How can the psychiatrists be allowed to define inaccurately my disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME? How can the psychiatric lobby get away with changing the name to CFS to ensure this wrong focus? How can the neurological nature of this illness be dismissed and people who have neurological symptoms be denied a proper service because of them? How can inappropriate therapeutic techniques be promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially if not actually?

Why is the ME community so divided when the issues are so clear?

People with neurological Encephalomyelitis are physically ill.

They need biomedical research and new biomedical treatments developing. They need physical research to understand the disease and develop a true identification process. They need accurate diagnostic# criteria, accurate physical diagnosis and prognosis.

They need psychiatry to be placed back where it belongs which is not as a first line involvement with people with ME. They need a Benefit system and an NHS service that is not marred by vested interests. They need GP's who understand that ME is a physical illness. They need full body mapping and proper in depth tests that will show the wide range of serious dysfunction in the many different systems of their bodies. They need a full biomedical report. They need validating, supporting and valuing. They
need new aids and equipment developing that can take into account their very special needs due to acute hypersensitivity.

They need easy access to benefits and aids and equipment and services. They need care staff and medical staff and anyone involved in offering an ME service to be properly trained and aware how best to work with people with such complex symptoms.

They need to be seen and heard and understood. Services need a complete change and need to be underpinned by sound biomedical research and knowledge.

If people with ME and all people who are involved with ME spoke and worked in unison we might actually start to get somewhere.

The worst thing about having ME is not the vast array of unending symptoms , that there are no drugs to alleviate, it is the isolation caused by people , both medical, official and in society including families, who do not understand this is a serious and severely disabling physical illness.

It is having to live in fear that you wont get your benefits. It is having to accept you will get wrong treatment or poor treatment or no treatment often ,.

It is knowing that you are physically ill but here is no appropriate treatment for you and there is not going to be unless the untruth pushed by the psychiatri lobby is drowned out and shown to be false.

It is knowing that there are few clinicians if any who can actually help you. It is knowing that you have not had proper tests and that you are not going to get them even though there are tests that could be done.

It is knowing that the psychiatric lobby is downplaying this serious neurological illness and saying it is a mental health issue and no research or tests are necessary.

It is knowing that you need a proper diagnosis and medical involvement to gain the benefits , but if your GP or clinician or benefit agency doctor is psychiatrically oriented you are simply not likely to get the right help and support that you need.

It is knowing that as your neurological symptoms worsen that there are no neurologists who are willing or interested to help you locally and you are too ill to travel to see someone anyway.

It is knowing that going to hospital for tests is most likely a waste of time and energy and will lead to disappointment because they are not doing the right tests.

It is knowing that if you need drugs for some other condition they may well react badly because of your ME so you do not know if you dare take them.

It is knowing that the psychiatric promotion of the biopsychosocial approach is so successful that it is wrongly influencing doctors and nurses who may have to treat you one day and will not understand how very ill you are and will not therefore understand how to treat you properly.

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