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.
- Personal Independence Payment: assessment thresholds and consultation response by the 25% ME Group and Stonebird
- Can anyone legitimately claim not to believe in ME ?
- Hate Crime in the UK
- Pushed to Extremes
- Speak Your Truth
- Letter to my MP re the Health Reform Bill
- Trust Is all we have Left
- What Can You Do ?
- How Do You help Someone with Severe ME ?
- The Dark Side of Medicine
- 2011 : a Wish List
- Stakeholder response to NICE
- Psuedo Science in the UK
- Psychological Assault
- Hit the BANKERS, not ME !
- Where's the ME Charities ?
- All the Hooey
- A response to " Managing my ME"
- Reclaim your Power !
- A Manifesto for the ME Party
- ME Activism in a post-NICE World
- Check out the Facts
- The Reality of Living with Severe ME
- Be a Trouble Maker
- CBT and GET a Bounday Issue
- A Severe ME Guide to claiming DLA
- There is a Place Beyond Anger
- Come to bed with me
- The death of all orthodoxies
- A Severe ME Aware Nursing Model (Microsoft Word)
Personal Independence Payment: assessment thresholds and consultation response by the 25% ME Group and Stonebird.
1. The government wants to find new and better ways to work out who getsPersonal Independence Payment. This will be done through an assessment.
We are concerned that the true intention is primarily to cut costs ratherthan meet need. We are aware that the stress surrounding the whole reassessmentprocess will put peoples’ health and lives at risk, especially those withSevere ME, who are extremely vulnerable and likely to deteriorate, under thesecircumstances.
The whole message, highlighted by the cartoon on page 5 of the Easy ReadDocument, is a confusing one for people. The cartoon is too simplistic aninterpretation. A lot of people with ME do not necessarily get the amount ofhelp they actually need, like the carer in the picture, because they are so physically hypersensitive and ill and may be unable to access that help.
We would like to pose the questions:- “Will PIP be a genuineassessment of need, or will it be based on a flawed assumption based on whatpeople currently get?”, and,
“Is PIP going to make the assumption that the applicant doesn't needthe care, because they currently haven't got it?”
We would also like to ask what PIP actually considers“independence” to be?
2. Many people and groups got in touch and they had some good ideas to makePersonal Independence Payment better.
We consider this statement to be incorrect; as the last consultationresponse was ignored.
The need for DLA, as it is, is apparently accurate, given the extremely lowfraud rate. We, along with many other groups, asked the Government not to goahead with these changes and to keep DLA as it is. Also the last consultationwas confusing and was likely to result in people answering the questionswrongly, because the questions were so complicated.
To make these changes to the benefit system is to deny peoples’independence because so many claimants will lose money, as a result. PIP,paradoxically, as we spelled out in our last response, will actually result ina loss of independence for many people, who are currently assessed as having agenuine need.
3. On 14 November 2011 the government sent out a second booklet about thechanges it had made as a result of the consultation. The booklet was called“About the Personal Independence Payment Assessment.”
We were not sent a booklet and were unaware of the second consultationprocess, even though we participated in the first consultation. Who was thebooklet actually sent to? Was it sent out only to a certain percentage ofrespondees, given we did not receive one?
Is this a genuinely inclusive consultation process, where you are reachingeveryone who has an interest, or are you simply excluding those who do notagree with your strategy?
4. There will be 2 rates of Personal Independence Payment – a standardrate and an enhanced rate
As we stated in our first response, we do not agree that there should beonly two rates, as this will automatically exclude all those currently on low rate DLA, presumably. PIP, therefore cannot be about enabling independence, asit claims, as many people will be negatively impacted upon by this loss andtheir health and safety might be at risk.
This is particularly of concern because people with Severe ME do not alwaysreceive the right level of DLA in the first instance and may therefore end up being excluded all together, because of misinterpretation of their need.
5. Daily Living Activities:
Without knowledge of what specific questions are going to be asked to assessdaily living activities, it is impossible to say whether 8 points is evenachievable. Therefore it is unsafe to give to give the government the go aheadwithout knowing in detail how you achieve 8 points.
Not enough detail has been provided here to make a full comment.
The key point is how you frame the questions and whether this will result inthe correct information required to safeguard the needs of the ill person. Wefeel the danger is that the questions may be so confusing, severely ill peoplewill be so confused and therefore not answer them fully or correctly toactually reflect all their needs.
We would hope there would be adequate space to explain needs and not just asimple tick box system, which will not give adequate protection for people withSevere ME by not facilitating their need to fully explain the dailyrequirements.
6.Taking medicines, looking after health and doing treatments a health expert says are important .
It is extremely concerning that this has been included. It sounds as if thiscould be used to withhold benefit if people do not comply with treatments whicheither may be impossible for them to do or may actually risk being harmful tothe person. With ME there is great potential of harm if people are going to beforced to undergo a Cognitive Behaviour or Exercise programme in order toreceive their benefits.
It is completely unacceptable to raise this issue as a benefit need. We feelthis needs to be withdrawn to make PIP safe for people.
7. The change to Personal Independence Payment in 2013 will only affectpeople aged 16 to 64.
Why is it not in line with pension age rises, which are going beyond 65?
8. So, by the end of March 2016, half a million fewer people aged 16 to 64will be getting Personal Independence Payment than would have been gettingDisability Living Allowance.
How does this equate with the idea of enabling independence, when you aregoing to cut half a million disabled people off from essential financialsupport for independent living?
Given the fraud rate is only 0.5%, how can you justify removing half amillion people from benefits? This appears to be discriminatory.
9. To make sure the assessment takes this into account, the governmentthinks that the assessment should look at how a condition or disability affectsa person’s daily life or mobility over a 12-month period.
This is very concerning. We are unsure what the actually means. Does thismean that claimants will be subjected to continual investigations andreassessments? Also, how are you going to ensure that anyone involved in thisprocess understands the physical reality of chronically ill patients?
What is the actual justification for this idea of continual investigationand reassessment if the government has already accepted that unless you can dosomething constantly you cannot manage it. It seems to us that to continuallycheck on people to see what they can do at any one point, sounds like anharassment of the chronically ill and is likely to cause great harm to peoplewith Severe ME who are at great risk of post exertional deterioration andphysical decline, caused just from the effort of assessment itself. It is alsoan unnecessary waste of taxpayers money and likely to cause seriousdeterioration in people's health and life as a consequence.
There is such misinterpretation and misunderstanding of the severity ofillness in ME that people with ME will at great risk of misinterpretation andmisrepresentation. If someone has a variable condition they should be respectedas disabled without constant monitoring, worry and stress.
10. If the person’s health condition or disability affects them enough to get assessment points for
• at least half the year (183 days or more), the points should be takeninto account in the assessment for the full year.
• less than half the year (182 days or less), the points should not betaken into account in the assessment at all.
If a person’s health condition or disability affects them enough toget points during any part of the day, the assessment should treat those partdays as full days.
How is the government going to determine a variable condition in the firstplace? Are they going to choose certain illnesses and treat everyone within that category the same way? This could certainly result in unnecessary stressand potentially a decline in health, as a direct result of the repeatedassessment procedure.
How is the government practically going to do this without making peoplemore ill and wasting taxpayers money?
If you have a disease, you have it; you do not have it some days and notothers, even if you can manage some days better than others. It is wrong to putthis additional reassessment burden on people.
On what basis has the government decided that 182 days is the cut-off? Howare you going to determine on the 183rd day the person is still eligible forbenefits? It should be respected they have the illness all the time.
We feel this is just making people's lives harder, not enablingindependence.
11. The government thinks that the person doing the assessment should alwaysthink about whether a person can do an activity ‘safely, reliably,repeatedly and in a timely fashion’.
• Safely means that, when doing the activity, the person is unlikely tohurt themselves or other people.
• Reliably means that the person can do the activity in an acceptableway.
• Repeatedly means the person can do the activity as many times asneeded during the day.
• In a timely fashion means the person can do the activity in less thantwice the time it would take a person without a condition or disability.
Is the government going to publish the precise times they are talking about or will it be up to the assessor to make an arbitrary decision? Anything less than "normal" ability is going to be potentially dangerous to health and safety.
Who is being judged as fit and able, who is being used as a benchmark?
An arbitrary judgement of how long is ridiculous. If, for example, you need to get to the toilet, have an overheating chip pan, break or need to apply the break while driving, an immediate response is required for safety. Anything less than full ability should count towards points. It would potentially endanger people's lives to make these judgements.
Some Key Points about Specific Questions in the Consultation
Question 1 – What do you think of the government’s latest ideas about the daily living activities?
Endangering, sinister, punitive, neglectful, arbitrary and prejudiced.
Question 2 – What do you think of the government’s ideas about the points allowed for daily living activities and the points you need to get this component?
Not enough detailed information to make a fair judgement.
Potential to misrepresent real need.
Question 3 – What do you think of the government’s latest ideas about the mobility activities?
Not enough information on how it is going to be assessed, what questions are going to be asked and what information will be required.
Question 4 – What do you think of the government’s ideas about the points allowed for mobility activities and the points you need to get this component?
Not enough information to tell.
Question 5 – What do you think of what the regulations say about deciding who can get the payment?
The fact the government’s intention is to take half a million disabled people off DLA rather than honour their need, is unacceptable. There is a discrepancy between what the government says it what it wants to do and what it is actually doing.
There is also no clarification whether the proposed high rate will be the same as high rate DLA.
Question 6 – What do you think of the government’s ideas for dealing with health conditions that are sometimes a little better and sometimes a little worse?
Unnecessary, discriminatory and irrelevant. If you need help some of the time it should be equated with needing help all the time, there is no need for this harassment of disabled people. The underlying motive is suspicious.
Question 7 – What do you think of the government’s ideas about the meanings of the following words – safely, reliably, repeatedly and in a timely fashion?
"Timely fashion" is ambiguous, it appears to be completely arbitrary, vague and not respectful enough of the individual problems and issues people experience.
Question 8 – What do you think about the way the regulations show the meanings of words?
Not enough words have been explained. There is not enough detail about how people will be assessed and how the points will be allocated to particular abilities, within a section, on which to base comments generally.
Given that the Personal Independence Payment: second draft of assessment criteria 2.10 states : "As with the technical note we published in May, this document does not consider the delivery of Personal Independence Payment assessments as work on the claims and assessment processes of the new benefit is still ongoing." People should not be asked, at this stage to make blanket comments validating the process.
Question 9 – Do you want to say anything else about the draft regulations?
We are greatly concerned that people with Severe ME may be subjected, wrongly, to additional assessments and hope that people who are severely affected will not have to face the added burden of a yearly assessment which appears to be discriminatory rather than supportive.
It is unacceptable to have any health provider recommendation associated with gaining benefits whatsoever and needs to withdrawn to ensure people's safety in obtaining support.
Can anyone legitimately claim they do not believe in ME ?
ME is assumed to affect about a quarter of a million people in the UK. Some are mildly affected, some moderately affected and about 25 per cent are believed to be so seriously affected that they are housebound or even bedbound.
Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, ME can leave a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease, and as severely disabled as someone with heart failure, late-stage AIDS, Multiple Sclerosis , or a person undergoing chemotherapy.
Myalgic Encephalomyelitis (ME), has been classified by the World Health Organization (WHO) as a neurological disorder since 1969. Currently it is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD, the WHO approved the term “Chronic Fatigue Syndrome” (CFS) as a term by which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3, hence the composite term “ME/CFS” is often used to denote the disorder. A synonymous term also sanctioned by the WHO is “postviral fatigue syndrome”.
Some people mistakenly think they have ME when in fact they have something else. Many others may have a wrong diagnosis, or none at all. The Centers for Disease Control and Prevention (CDC) believes that of the estimated one million to four million Americans who have ME, less than 20% have actually been diagnosed.
ME was recognized as a specific disease entity by The Royal Society of Medicine in 1978 and was recognized as an organic disease by the UK Department of Health in November 1987.
On the 25th November 2008, the Northern Ireland Minister for Health, Social Services and Public Safety, admitted that ME is "a very real and debilitating neurological condition".
On 23rd February 2010, in an Adjournment debate on ME, Gillian Merron, Minister of State (Public Health), Department of Health, stated:"I want first to put on the record that we accept the World Health Organization's classification of ME as a neurological condition of unknown cause."
On 28th May 2010, Kay Ellis confirmed on behalf of the UK Chief Medical Officer: " The Department's view is that it is important to recognize that CFS/ME is a genuine and disabling neurological illness and health professionals must recognize it as such".
On 19th June 2008, Stephen Atkinson on behalf of the Department of Health confirmed:"I would like to assure you that the Department recognizes CFS/ME as a neurological disease".
On 11th October 2010, in a debate on ME in the House of Lords, the Countess of Mar asked the Parliamentary Under Secretary of State for Health, (Earl Howe) whether the coalition accepts that CFS/ME is a neurological condition and he replied that the " Government accepts that it is a neurological condition".
On Feb 2nd 2011 Paul Burstow, Minister of State, Department of Health, in response to Ian Swales MP, confirmed that there is :"strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem " .
On Nov 21 2011, the Minister for Welfare Reform, Lord Freud, stated that “ the term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability”; however, this is referring to the symptoms associated with the condition and is not a reference to its aetiology or classification.”
Even so, doctors and other professionals, even after all this time, still seem free to be able to choose whether or not they “believe “ in ME, whether or they treat ME as the neurological disease it is , or as a mental health disorder. As the Countess of Mar outlined on 11th October 2011 : “In desperation, frustration, or perhaps, egged on by periodic dramatic pronouncements from a small group of psychiatrists and eagerly taken up by the media supporting allegations of the spurious nature of this illness, medical practitioners and social workers too frequently resort to incarcerating adults in psychiatric hospitals under Section 3 of the Mental Health Act or, in the case of children, imposing child protection proceedings under the Children Act after accusing their parents of fabricated illness ideation.”
Hate Crime in the UK
The spate of offensive articles recently , attacking people with ME, needsto be seen against the backdrop of an alarming rise of Hate Crime againstpeople with a disability in the UK :From Stonewall :
Definition of hate crime
The Association of Chief Police Officers distinguishes between a hateincident and a hate crime. A hate incident is:
“Any incident, which may or may not constitute a criminal offence,which is perceived by the victim or any other person, as being motivated byprejudice or hate.”
Whilst a hate crime is defined specifically as:
“Any hate incident, which constitutes a criminal offence, perceived bythe victim or any other person, as being motivated by prejudice orhate.”
From Scope :
20% of repeat victims of anti-social behaviour are disabled people
Only 638 people were prosecuted under disability hate crime legislation in2009/10, compared to 12,131 people for racial and religiously aggravatedcrimes. This amounts to 4.6% of the total number of prosecutions, based on theCPS annual report.
There were 1,569 recorded disability hate crimes across England, Wales and Northern Ireland during 2010, an increase from 1,294 incidents occurring in2009, according to recent figures published by the Association of Chief PoliceOfficers.
3 of the 44 police forces in England and Wales reported 2 or fewerdisability hate crimes in 2010. One reported none.
Deaf and disabled people in the UK are regularly mocked, taunted, robbed,assaulted and harassed. Their homes are attacked; their cars damaged and theplaces where they live, work and socialise are also targeted. In some cases,anti-social behaviour escalates into more sinister and serious crimes ending inkidnap, rape, torture and murder.
The motivation behind these crimes is not always clear but many bear thehallmarks of hate crimes. Disabled people frequently report that theirdisability was a factor in the crimes committed against them. Despite this, theoverwhelming majority of these incidents are not investigated, prosecuted orsentenced as disability hate crimes.
Disability hate crime remains largely invisible. Its existence is frequentlydenied, disabled people who report it are routinely ignored, and itsperpetrators often go unpunished.
From the Crown Prosecution Service :
The CPS wants disabled victims and witnesses and their families andcommunities, as well as the general public, to be confident that the CPSunderstands the serious nature of this type of crime. Feeling and being unsafeor unwelcome – from shunning or rejection to violence, harassment andnegative stereotyping – has a significant negative impact on disabledpeople's sense of security and wellbeing. It also impacts significantly ontheir ability to participate both socially and economically in theircommunities.
• The Disability Rights Commission's Attitudes and Awareness Survey (2003)revealed that 22 per cent of disabled respondents had experienced harassment inpublic because of their impairment. Incidents of harassment were more acuteamong 15-34 year olds with 33 per cent of this group of disabled peopleexperiencing harassment (DRC, 2003).
• Eight per cent of disabled people in London suffered a violent attackduring 2001-02 compared with four per cent of non-disabled people. Research byGreater London Action on Disability (GLAD) found that, "The attacks have amajor impact on disabled people. Around a third have had to avoid specificplaces and change their usual routine. One in four has moved home as a resultof the attack. Many disabled people are not confident that the police can helpto stop the incidents" (GLAD 2002).
• Research by Mencap demonstrated that 90 per cent of people with a learningdisability had experienced bullying and harassment. Sixty-six per cent ofpeople with a learning disability have been bullied regularly with 32 per centstating that bullying was taking place on a daily or weekly basis (Living inFear, 2000).
Safety and security, and the right to live free from fear and harassment,are fundamental human rights and the CPS recognises the wider community impactof disability hate crime where it strikes at all disabled people by underminingtheir sense of safety and security in the community. For this reason we regarddisability hate crime as particularly serious. Such crimes are based onignorance, prejudice, discrimination and hate and they have no place in an openand democratic society.
Further information relating to disability hate crime is available on thiswebsite in the Publications/Prosecution Policy and Guidance/Disability Hate Crime section.
From the Guardian :
The government's focus on alleged fraud and overclaiming to justify cuts in disability benefits has caused an increase in resentment and abuse directed at disabled people, as they find themselves being labelled as scroungers, six of the country's biggest disability groups have warned.
Some of the charities say they are now regularly contacted by people who have been taunted on the street about supposedly faking their disability and are concerned the climate of suspicion could spill over into violence or other hate crimes.
While the charities speaking out – Scope, Mencap, Leonard Cheshire Disability, the National Autistic Society, Royal National Institute for the Blind (RNIB), and Disability Alliance – say inflammatory media coverage has played a role in this, they primarily blame ministers and civil servants for repeatedly highlighting the supposed mass abuse of the disability benefits system, much of which is unfounded.
At the same time, they say, the focus on "fairness for taxpayers" has fostered the notion that disabled people are a separate group who don't contribute.
From the Welsh Government :
Positive action to deal with hate crime in Wales has been outlined by the Welsh Government Minister in charge of equalities.
Jane Hutt has announced that a framework for action will be created to tackle all forms of hate crime including disability-related harassment, as well as harassment based on race, religion,sexual orientation and against transgender people. It will be underpinned by strong consultation and clear evidence.
The approach will be supported by realistic and deliverable plans which will be deeply rooted in the Welsh Government working closely with their partners.
Minister Jane Hutt said:
“Incidents of hate crime are shocking and unacceptable. I am committed to the Welsh Government taking a strong lead in this area.
“We all have a duty to protect those who are most vulnerable to harassment in society and to ensure that disabled people and those with long term health conditions are able to live a life without fear.
“I think that there is an excellent opportunity under the new Welsh specific equality duties to work closely with public sector organisations to tackle and respond to these particular issues.
“I want to ensure that we live in a society where hate crime is not tolerated, so that people in Wales feel free to live within safe and vibrant communities.”
A commitment to tackling hate crime is made in the Welsh Government’s Programme for Government, and these plans have been previewed in a response to the Communities, Equality and Local Government Committee’s inquiry into disability harassment in Wales.
Ms Hutt has also emphasised that she is committed to building on recent research into hate crime, and will commission work to examine the perpetrators of hate crime and their motives in the very near future.
From the Independent :
Disability hate crimes rose by more than a fifth last year, figures showed today.
Police recorded 1,569 incidents where the victim thought the alleged crime was motivated by their disability in England, Wales and Northern Ireland, compared with just 1,294 in 2009.
From the BBC :
Many disabled people are victims of hate crimes on a routine basis, according to a report.
It says some 100,000 disabled people in Wales were victims in 2009/10, and the four police forces all saw rises in reported disability hate crimes in 2010/11.
The findings come from the Equality and Human Rights commission which carried out a disability harassment inquiry.
The inquiry made four recommendations aimed at reducing harassment.
"People told us they routinely experience different forms of harassment such as name calling, physical violence, bullying and cyber-bullying, sexual harassment, domestic violence and financial exploitation," the report said.
"Some disabled people say they just accept it as inevitable and live with it. Others try to rearrange their lives to avoid abusive situations.
Pushed to extremes
Greg & Linda Crowhurst 6th January 2011
(Permission to repost)
The caution order issued to the clinical scientist , found guilty ofprofessional misconduct over the Sarah Myhill case, has been predictablygreeted by accusations that he is a victim of "ME extremists."
Any genuine ME sufferer - or carer - would surely be called an "extremist"nowadays; the disease has been so drowned in a sea of fatigue misrepresentationthat they have to speak up loudly to get anywhere :
It is EXTREMELY exhausting and demanding wading through all the falseinformation and generalised non- information that is presented as fact aboutME.
I have to work EXTREMELY hard to raise awareness and attention to thetruth.
I have to keep fighting EXTREMELY hard to get the right biomedical servicefor my wife .
I have to see the truth of my wife's EXTREMELY severe Myalgicencephalomyelitis and keep representing that truth till people hear and see theEXTREME abuse that has been happening to patients and people with severe ME fordecades now and the EXTREME negation that has happened at the hands of thepsychiatric lobby , of the true physical reality of Severe ME, misrepresentedas if it is as a fatigue syndrome ; which is utterly inaccurate.
That makes me an ME extremist then - and proud of it.
People with ME :
have to endure condescension and dismissal by neurologists , doctors, nurses, social workers, not interested in their neurological symptoms.
have to endure inappropriate therapeutic techniques being offered ,for theirserious physical disease, as "treatments".
have to endure the promotion of a biopsychosocial approach to their disease,when it is not a mental health illness.
have to endure a complete lack of biomedical ME clinics and a dearth ofbiomedical ME clinicians .
have to endure no government backing for accurately identified, clearly andadequately defined ,physically focussed, ME research.
have to endure lobbyists and psychiatrists who have vested interests ininsurance companies, being allowed to be advisors to the DWP regarding guidancein their illness.
have to endure psychiatrists being allowed to inaccurately define theirdisease with too few symptoms and promote a vague symptom of fatigue that isnot the primary dysfunction in ME.
have to endure the psychiatric lobby getting away with changing the name oftheir disease from" ME" to "CFS" ,to deliberately ensure a wrong focus.
have to endure inappropriate therapeutic techniques being promoted bygovernments, when they are not wanted by people with ME as they make them moreill and disabled .
have to endure the vast array of unending ME symptoms and the fact thatthere are no drugs or appropriate biomedical treatments to alleviate them ,because the Government has wasted millions of pounds upon pointless psychiatricresearch .
have to endure the isolation caused by people , both medical, official andin society , including friends and families , who do not understand that ME isa serious and severely disabling physical illness .
have to endure living in fear that they will not be awarded or keep theirbenefits .
have to endure knowing that they need a proper diagnosis and medicalassessment but if their GP or clinician or benefit agency doctor ispsychiatrically oriented , they are simply not likely to get the right help andacknowledgment that they need .
People with ME have been pushed to the extreme edge by neglect, isolation,deliberate ignorance and misrepresentation. When you are pushed to that extremeyou have to react by speaking out.
I am an ME extremist, then, in the true sense that I demand ME to be treatedas the unique disease it is and I speak out for people with this devastatingWorld Health Organisation neurological disease that damages lives and is stillalmost totally neglected by medicine .
An ME extremist , then, is someone who wants to have the boundaries of theneurological disease respected, who wants a biomedical service for thisbiomedical illness and does not want it represented as something it is not ,anymore. You have to be extreme, you have to work extremely hard , to uncoverthe truth and get justice.
It is extremely difficult to find a biomedical practitioner.
It is extremely difficult to find someone who does not use the term "fatigue".
It has to stop.
My wife is sick of having a disease that is dangerous to have , because no one understands it and everyone buys into the manipulated lies , churned out relentlessly by the psychosocial lobby that this is a mental health fatigue disorder. It is not .People who have a mental health fatigue disorder need to be separated from genuine neurologically ill ME patients so that everyone can get the service they need. Their needs are different.Why can't the medical profession recognise this , so that we can all safely move on?
So for 2012 let your motto be : No more neglect. No more compromise. No more CFS for ME.
Say No to psychiatric abuse and misinterpretation
Say No to ME and CFS being equated as the same thing
Say No to the Oxford Definition and Fukuda definition being used to identify fatigue patients as having ME . They are not suitable to identify ME.
Say No to the mislabeling of ME as Opathy, CF, CFS/ME or even ME/CFS.
Say No to the psychosocial pathway for ME
Say No to generalised fatigue being described as the primary symptom for ME
Say No to misrepresentation
Say No to misinterpretation
Say No to the wrong education of practitioners
Say No to ignorance
Say No to psychiatric domination of a biomedical, neurological, physical disease.
Say No to the denial of the symptoms that people with ME have.
Say No to not listening to your client
Say No to preset agendas of what to do.
Say No to psychosocial misdirection
Say No to the twisting of the truth about ME
Say No to media bias
Say No to the psychiatric myth
Say No to the popular cultural myths about ME
Say No to compromised ME organisations
Say No to compromised media
Say No to the power of vested interests to manipulate.
Say No to the NICE Guideline
Say No to the NHS Chronic fatigue syndrome and myalgic encephalopathy (CFS/ME) management care pathway
Say No to the pretense of working for and with people with ME whilst actually offering a fatigue service.
Say No the burying of truth
Say No to being off the radar
Say No to hypocrisy
Say No to not looking for what is physically wrong with people
Say No to denial
Say No to compromising the truth of ME to get funding, power, or for personal ego or political manipulation.
Say No to complicity
Say No to not speaking up
Say No to mistreatment of ME
Say No to biomedical neglect
Say No to the lie that are you are going to get better with no proper physical biomedical treatment or input.
Say No to the blurring of boundaries between ME and other illnesses.
Say No to the bias in medical journals toward fatigue.
Say No to the psychiatric bias in the nursing profession.
Say No to the biased peer review systems.
Say No to the biased Influence of psychiatry in government organisations such as the MRC.
Say No to the continual twisting of the truth by allowing the wrong people to represent the illness.
Say No to the inaccuracy with which ME is portrayed.
Say No to the endangerment of health that is happening
Say No to people getting away with saying they believe ME is psychiatric.
Say No to the misuse of the word ME for people who do not have it.
Demand that :
ME be removed from a sea of fatigue conditions and psychiatric mental health issues
Proper diagnosis and treatment is provided for everyone in the correct category
ME be given the respect of the unique neurological disease it is.
Practitioners stop treating ME the same as any Fatigue illness, it is not a fatigue illness, it is a serious, potentially life-threatening neurological disease.
The misdiagnosis, mistreatment, generalisations, the fundamental denial of the unique difference that ME is a neurological multi system disease, stops.
Fatigue practitioners are not given any money for ME research.
ME is only researched using the correct ICC criteria.
ME clinics for ME patients only. Fatigue clinics for fatigue patients only.
Speak Your Truth
Greg Crowhurst 9th September 2011
Under an intimate, dim, glow, last night, because she is too light-sensitive for bright lights, a world-class biomedical Consultant, two Doctors and a Perrin Practitioner , crammed themselves into our long, narrow kitchen , finding themselves a chair, if they were lucky, a stool, or just somewhere to lean, while my wife listened , through a half-closed door and layers of agony, in the adjoining, darkened living room.
The discussion was electric, alive with ideas and suggestions of possible ways forward, referrals that will be made, for a woman too severely affected to be even touched .
All that happened - is happening - because 17 years ago, my wife spoke the truth that she is ill. At first I struggled to believe her, but eventually I heard.
Then we fought , painful is not the word, against the mountain of heartbreaking prejudice, that surrounds ME, for many years to find a good GP- and he heard. So began the long lonely struggle to get to the top, to speak one-to-one, over a coffee, to those who run our local Primary Care Trust , eventually they too heard.
We make good use of the Formal Complaint process ; we never, ever give up.
Two words , make all the difference in the world :
"No more !"
Sick of being abused by the clueless, cruel psychiatrists ?
"No more !"
Sick of your local NHS not providing any biomedical ME service ?
"No more !"
Sick of the lies and nonsense that are spoken about ME ?
"No more !"
If you dare to speak out , if you dare to challenge being left ,suffering endlessly without a biomedical ME service, if you dare to complain about inappropriate and misguided treatment, if you dare not to compromise one iota over the absolute need for proper ME biomedical tests and treatments , eventually you will be heard.
Then others will hear , and they will tell others and so the word will spread and eventually good , positive, things will happen for you : we call it building The Matrix of Truth.
Letter to my MP re the Health Reform Bill - 6/9/2011
As you may remember, I care full time for my wife who has Very Severe ME; we are very worried about the possible implications of the Health Reform Bill, which , in our opinion, is focused upon choice limitation, demand reduction and profit generation, rather than patient need, especially the needs of the most frail, disabled and vulnerable, and are writing to ask you to oppose it.
The reforms ,which appear to be based upon a privatised ,US “managed care” system, will result, in our opinion, in the tragic situation where those who pay or are insured will get a better service than those who do not.
We are particularly concerned that GPs will be given the power to choose which services they provide in local areas , this means that a person with ME , if they receive a service at all, might not be able to get access to the same services as someone who lives down the road from them , purely because they live within a different commissioning group.
We are also very worried that if this Bill goes ahead, how in a few years years from now independent GPs may have been driven out of the health system and into insolvency by American-style Health Maintenance Organizations (HMOs), especially given how some of those key players might include :
• UnitedHealth, a health insurance company and health maintenance organisation (HMO) already involved in NHS commissioning, which has settled an accusation of major fraud out of court against the US Medicare scheme which funds health coverage for elderly US citizens;
• Hospital Corporation of America, which admitted its guilt in a case of Medicare fraud, leading to the then largest ever fraud settlement in US history;
• General Healthcare Group (GHG), a subsidiary of the South African corporation Netcare, which pleaded guilty to illegal organ transplants;
• Care UK, owned by private equity firm Sovereign Capital; just before the last election, the wife of one of the owners of this firm allegedly contributed £21,000 to Andrew Lansley’s private office, according to the Daily Telegraph .
(Source : Liberating the NHS: source and destination of the Lansley reform . Dr Lucy Reynoldsa, Dr John Listerb, Dr Alex Scott-Samuelc & Professor Martin McKeea 29 August 2011 pcwww.liv.ac.uk/~alexss/nhs.pdf)
My wife has already suffered for decades under the influence of the giant US Healthcare provider Unum Provident , which has seemingly gone out of its way to propagate the myth that ME is not a physical disease. The last thing we want to see happen is even more power being given to these vast multinationals.
We are very concerned how another key player , the Conservative think-tank Reform has according to the BMJ, been funded by at least three of the prospective entrants to the new English healthcare regime (GHG, and management consultants KPMG and McKinsey who are involved in NHS commissioning) .
We fail to understand why these Health Reforms are necessary at all; the existing NHS is widely considered to be one of the least costly healthcare systems, in the world, with one of the best levels of access to care.
We have little confidence in this Government and the way in which it has gone about amending the Bill in such a piecemeal fashion. We are very worried indeed about the repeal of the government's duty to provide a comprehensive system of healthcare; about allowing private companies to challenge GP consortia ; about allowing the National Commissioning Board to distribute funds with no regard to equality; about the fact that Monitor's future role in promoting competition has barely been touched.
We urge you to take note of the British Medical Association’s , call last week, for this legislation to be withdrawn or substantially changed , they highlight :
Inappropriate and misguided reliance on market forces
Unintended, knock-on impacts with longer-term consequences such as the impact on public health and medical education and training
Over complexity and bureaucracy following recent changes to the Bill
Please also take note of yesterday’s UNITE poll, which shows that 90% do not trust David Cameron on the NHS and 70% believe, as we do, that this Bill will lead to privatisation.
Trust is all we have left
"Hold me, I am burning with pain."
I hold her, I cannot feel her, she is so lost in the agony; completely, down to every single millimetre, in her deepest depths , ill.
We hold each other, alone. Three things I have learned :
1.To the extent that you are not prepared to compromise, to that extent you suffer acute isolation and rejection.
You cannot afford to trust anyone who says they know what they are doing.
3.No one knows what they are doing, when it comes to Severe ME.
At best you hope that they will be humble enough to admit it, that they enter into it with you and help you work something out possibly, in diminutive steps.
One thing I know : There is no hope currently for people with Severe ME.
This I will never do though:
My anger is too deep , my faith too ragged , too battle-hardened , my love much too strong for that; like a banner , the Breakthrough Prayer is unfurled tonight and every Saturday night , sweeping ME into the sea : http://www.stonebird.co.uk/breakthroughprayer.html
Things are very bad, trust is all we have left now.