Essential Reading on Severe ME :

Contents :

Now is the Time : One Last Push !

We have just received confirmation that there is STILL time to submit your response to The Government's White Paper, Equity and Excellence: Liberating the NHS

The NHS have confirmed that any response up to 23.59 tonight, 14th Jan, will be recorded as being received on the 14th. The NHS are also able to accept responses up to the next working day ie Monday as being within time.

Already there has been the most phenomenal response , plus media interest. Please, please , while there is still time, make your voice heard too , this is so important.

Let the UK Government hear a mighty roar of protest from people with ME ! Let them hear loud and clear how much we despise the travesty that is the psychosocial approach and how much we demand urgent change and proper biomedical choice.

How To Take Part

(these instructions can also be found on www.stonebird.co.uk)

Simply send the letter below to the NHS :

If you are well enough please add your own comments on your experience of the NHS and how long you have been ill.

Familes are also invited to write in and describe the impact of ME on family life.

As Carers's should be considered expert care partners; they too can submit .

Email this letter tochoiceconsultation@dh.gsi.gov.uk

cc whitepapermechoices@gmail.com : so we can log the response figures.

Dear Sir/Madam

I submit the following information for inclusion in the white paper consultation http://www.stonebird.co.uk/Now is the time.doc and ask you not to reach any decision regarding provision of choice for ME patients without ...fully exploring this evidence.

Yours sincerely

Zombie Science and the Non-Random UK 'CFS/ME' PACE Trial... by Kevin Short

In spite of being furnished with a great deal of biomedical evidence from registered stakeholders[1] that contraindicates their "CFS/ME"Clinical Guideline 53 (CG53), in their recent (and overdue) scheduled Guideline review, The UK National Institute for Health and Clinical Excellence (NICE) have stated that their Guideline Development Group (GDG) sees no current reason to update or amend their guideline[2].

This announcement quite rightly received protests from UK stakeholders and ME charities.

It would appear however that NICE have given unfair favour to stakeholders who effectively support/represent the psychosocial lobby: stating that "a number of stakeholders advised that the results of the PACE Trial are due to be published in 2011." And which, unlike the extensive biomedical evidence provided, may warrant upgrading of CG53 in the near future. NICE states: "As this significant trial [PACE] may affect NICE's final decision regarding whether its existing guideline warrants an update, NICE is deferring its announcement until further information is available. This is so that the conclusions made by NICE are as accurate and informed as possible. In the interests of high quality patient care...7quot;

A brief examination of some key points of concern of the PACE trial would therefore be timely in my view as there is every indication that NICE should NOT be viewing said trial as scientifically "significant"and that basing a clinical guideline upon it will be very far from being "In the interests of high quality patient care..."

Firstly, from the outset the psychosocial PACE Trial was viewed as highly controversial, had significant difficulty recruiting patients and was plagued with an extraordinary high drop-out rate: just some of the reasons that the PACE results are overdue by years.

Secondly, The Designers and Principle Investigators of PACE have long-standing links with the health insurance industry and have clear conflicts of interest in that insurers stand to gain if patients are viewed as suffering psychosocial illness that is treatable by CBT/GET.

Thirdly, One of the main financial sponsors of PACE is the UK Government's Department of Work and Pensions (DWP). The DWP also has a clear conflict of interest in potential welfare benefit savings if patients are viewed as suffering psychosocial illness that is treatable by CBT/GET.

Fourthly, PACE unscientifically conflates patients suffering from the physical neuroendocrine disease known as Myalgic Encephalomyelitis (categorised by the WHO in ICD-10 section G93.3) with those suffering from psychiatric/idiopathic fatigue syndromes (categorised separately by the WHO in ICD-10 section F.48). This is in defiance of good scientific practice and contrary to World Health Organisation medical health taxonomy which the NHS and NICE are legally obligated to adhere to.

Fifthly, The PACE "Oxford" patient selection criteria are unscientific in that they rule out patients presenting with cardinal symptoms of ME and broadly include those with psychiatric symptoms. These criteria are far from widely accepted in the medical profession and were part funded by PACE Principle Investigator Professor Peter White who also has a long professional association with the medical insurance industry[3].

Sixthly, the internal PACE Trial Manuals obtained by the ME Community under the freedom of information act clearly and unequivocally show that PACE Trial recruiters and operators were inappropriately selecting and filleting patients in a manner that is far from good practice expected of genuine Randomised Control Trials (RCTs) - see extracts and links below[4].

Such is the level of concern that PACE is not a genuine Randomised Control Trial, is not genuine science in any recognisable way and is in fact fraudulent, that many complaints have been made. Not least an extensive formal complaint to the UK Medical Research Council (MRC) by Professor Malcolm Hooper that presents truly alarming evidence of alleged scientific malpractice.[5]

It is a sad reality of modern life that scientific fact and objectivity do not quickley overcome bad science and vested interest. There is good reason to be concerned in this respect with regard to both PACE and NICE CG53. As professor Bruce Charlton states in his peer-reviewed paper entitled 'Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest': " In terms of the classical theory of science; bogus theories should be readily demolished by sceptical competitor(s)… However, in practice, it seems that the even the most conclusive ‘hatchet jobs’ done on phoney theories will fail to kill, or even weaken, them when the phoney theories are backed-up with sufficient economic muscle in the form of funding."[6]

Unfortunately, in spite of many concerns that PACE is phoney science based upon bogus psychosocial theory, there is every indication that the economic and establishment muscle behind it is substantial and we are about to have yet more questionable policy-based-evidence substituting for genuine evidence-based-policy. If so, ME patients will not be the only losers. It will be another nail in the coffin of public trust in scientific and governmental integrity. However, even economic muscle cannot hide the truth that ME is a physical illness for ever. I would therefore urge the ME community to keep fighting and keep funding good quality biomedical research. It always seems darkest just before a new dawn.

Kevin Short. 31 December 2010.

contact@angliameaction.org.uk [Permission to repost]

ENDNOTES:

[1] See for example: http://www.angliameaction.org.uk/docs/eame-nice-cg53-response-nov2010.pdf
http://www.angliameaction.org.uk/docs/25megroup-nice-cg53-response-nov2010.pdf
http://www.25megroup.org/Campaigning/NICE/25MEgroup%20NICE%20Stakeholder%20ProForma%20-%20Nov%202010.pdf

[2] http://guidance.nice.org.uk/CG53

[3] See 'Corporate Collusion' at: http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

[4] OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE: http://tinyurl.com/3xj3uke http://tinyurl.com/37h35ca " Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them" [Extract/quote from Official Pace trial Manual - See below]

INTRODUCTION:

Manuals for the PACE Trial have been placed on a file-sharing facility.

In my view the documents illustrate how psychological and emotional pressures have been applied to individual insecurities and scientific ignorance surrounding ME/CFS, providing insights into the nature and agenda of previous CBT and GET trials, and a view of the disease along with a seemingly acceptable way to treat and portray lay people with ME/CFS. The PACE documents and Study are endorsed/sponsored in the UK by the Medical Research Council (MRC), the Department of Health (DoH), the Department of Work and Pensions (DWP) and the Scottish Chief Scientist Office.

The files include the official/internal Manuals of the Principle Investigators of the psychosocial UK "CFS/ME" PACE TRIAL. No ME/CFS activist can afford not to download these large documents, circulate them widely and comprehensively examine them. In the manuals' author's own words, they lay bare what British ME sufferers are about to be exposed to, what underpins that which is likely to be used by NICE to endorse its "CFS/ME" Clinical Guideline 53 in its imminent internal review, and gives insight into what may lay ahead for patients in other countries that follow the UK model.

There are two separate large files, both of which contain the same set of Official PACE Manuals along with additional and respectively different sets of relevant bonus materials. They are available to be downloaded using bit-torrent / peer-to-peer file-sharing.

Either Google "XMRV - THE UK PACE TRIAL..." or go to the short URLs given below:

File-#1: XMRV - The UK PACE TRIAL [1] http://tinyurl.com/3xj3uke [IMPORTANT - Click on the small green link at this peer-sharing website entitled " DOWNLOAD THIS TORRENT", don't, repeat don't click on the Large green button with the word "Download" on it as this directs you away from the site.]

File-#2: XMRV - UK PACE TRIAL [2] http://tinyurl.com/37h35ca [IMPORTANT - Click on the small green link at this peer-sharing website entitled "DOWNLOAD THIS TORRENT", don't, repeat don't click on the Large green button with the word "Download" on it as this directs you away from the site.]

I am very grateful indeed to those making these files available to the ME community.

EXTRACTS/QUOTES FROM THE PACE MANUALS:

Standardised Specialist Medical Care Page 33 -

" If participants are insistent that there is an ongoing "physical" problem, it is rarely helpful to directly challenge them on this point. It is important that you acknowledge that their illness is real but its effects can be reduced by the way they manage it."

Adapted Pacing Therapy Therapists Manual Page 55 -

" A patient’s typical day will often look like the record shown below."

Time Activity

9.00 am Get up, Take 1-2 hours to come round, Get washed, dressed. Have breakfast. Feed dog, make packed lunches

10.00 - 12 noon Do various bits of housework

1.00 pm Prepare and eat lunch

2.00 pm · 5.00pm Rest, often sleep

5.00pm Walk dog (sometimes)

6.00 - 8.00 pm Feed children, talk to family, watch TV

9.0 pm Go to bed take 1-2 to sleep"

CBT Therapists Manual Page 20 -

"Perfectionism"

Just as personality can be a factor in contributing to the development of CFS/ME, it can also be a perpetuating factor. People who are perfectionists are likely to have more difficulty in taking breaks or rests in the day as they feel that they are "wasting" time and "should" be doing something useful. This may lead them to adopt a "boom and bust" approach to activity which makes it difficult to establish any sort of routine."

Adapted Pacing Therapy Therapists Manual Page 42 -

"Is this a cure? Be honest, the answer is no"

CBT Therapists Manual Page 125 -

" Many people have successfully overcome CFS/ME using cognitive behaviour therapy, and have maintained and consolidated their improvement once treatment has ended"

GET manual Page 55 -

"It should be explained that in order for the body to continue strengthening, and for changes to be maintained, that exercise should form a regular part of their lives from here onwards. The long-term benefits of exercise for prevention of CFS/ME specifically, and other diseases in general can be emphasised."

GET manual Page 59 -

"In contrast to CBT, it is important that you do not consciously provide cognitive interventions or interpretations e.g. suggest that being able to exercise more may mean that there cannot be a persistent viral infection in their body."

Pace Trial Management Group Page 31 -

"Graded Exercise Therapy Information for Participants. There is nothing to stop your body from gaining strength and fitness, as long as it is done in a carefully monitored way, relating directly with your own particular circumstances started and progressed at the right rate for you. Good luck!"

Pace Trial Management Group Page 84 -

" Your improvements will continue as long as you maintain your level of activity and exercise. It is crucially important not to stop exercising after discharge, but rather to continue maintaining or building upon the changes you have made. Establishing a routine of physical activity and exercise is essential to keep your good health and to prevent symptoms in future."

GET manual Page 23 -

" The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging. However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients."

GET manual Page 50 -

"A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback."

CBT Therapists Manual Page 50 -

" Current situation (housing, living with, work, benefits, interests)

This section will draw together a lot of what you may already know. It may help you determine areas that will need to be addressed in your sessions. For example, it may draw your attention to problem areas such as inadequate housing, financial difficulties due to not working that may be factors that are contributing to the maintenance of their CFS/ME. Although you will have asked about employment and benefits, it would be useful to find out, if they are not working, whether they want to return to their previous job.

There is some evidence to suggest that being on benefits and/or income protection (IP) are poor prognostic factors as they are contingent upon the patient remaining unwell. Knowing about their current interests/hobbies may be helpful when you come to discuss targets for treatment."

CBT Therapists Manual Page 97 -

" Discuss potential blocks to recovery

Participants may be following their agreed programme diligently, but may be experiencing difficulties in making progress, If this is the case, it is useful to identify and discuss possible reasons. There may be some very obvious reasons for their lack of progress, e.g. a total lack of support from a partner, ongoing stressful situations or having another illness on top of their CFS/ME.

Sometimes the reasons are less obvious. For example, if a participant is in receipt of benefits, or income protection (lP), this may inadvertently lead them not to push themselves too hard. This may result from a feeling of having to prove that they are "still ill" in order to keep their benefits."

CBT Therapists Manual Page 99 -

":Being in receipt of benefits or income protection (IP)

If this is something that has not already been addressed, it is important to address it at this stage. People with CFS/ME are sometimes very keen to come off benefits and it does not cause them too many problems, maybe because they have another source of income. However, it can raise a lot of issues for other people and can be a source of great anxiety.

Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them.

In reality, benefits and IP can help patients financially in the short—term, but prove to be an obstacle to getting better in the long term. In order for benefits or IP to continue, patients have to have regular check-ups in order to prove that they are still ill. This can understandably be very distressing for patients and be an active factor in maintaining their condition. For some patients, returning to work can be very frightening as it may have been a major contributing factor to them becoming ill in the first place. Obviously for some patients, work is not an option due to the severity of their symptoms.

For more information on work related issues, please see Appendix 20. There is also a section in the participants' manual on work, courses and resources that you may ask them to read"

CBT Therapists Manual Page 100 -

"Benefits

Participants may feel trapped by their benefits, i.e. some benefits will stop being paid if they earn more than £20.00 a week. Participants may find the prospect of stopping benefits and working the number of hours required to earn more than their benefits would pay quite daunting. They can also be very fearful that if they come off benefits and have a relapse, they will not be able to receive benefits again. It is therefore useful to spend time discussing their fears and discuss different options. If they are keen to come off their benefits, it is useful to discuss steps to be taken to increase their ability to work, e.g. by doing some voluntary work, or "permitted work".

IP

For participants who are in receipt of IP, it can be worth discussing the advantages and disadvantages of being on it. For participants who feel clear that they do not wish to return to that job, it may be useful for them to discuss the possibility of resettlement options with their employer. For participants who wish to return to their previous job, but feel unable to work the hours that they used to do, you could suggest that they discuss a graded return to work, or part-time work. For participants considering a return to work it is helpful to suggest that they build up their stamina and confidence in their ability to work again, e.g. by doing some voluntary work., For participants who want to leave their job, it is worth discussing different options with them and getting them to look at different alternatives for homework.

It is helpful for you to offer to write to employers, insurance companies, be involved in meetings with their occupational health department or what ever is necessary to help participant to meet their work-related goals."

CBT Therapists Manual Page 67 -

" Feeling that a physical cause has been missed and wanting further investigations

Some participants may not hold a specific belief about what is wrong with them, but feel that despite many investigations, something has been missed. They may feel that they want to continue having investigations or try a variety of treatments until they are cured. Again, it is important to empathise with their situation, but to encourage them to hold off having further investigations until after they have completed a course of CBT.

Participant

I am feeling so exhausted, I really cannot believe that all my tests are clean l feel sure that something has been missed. I think I might go to my GP just one more time to ask him if there are any other tests that I could have.

Therapist

I can understand that with feeling the way you do, you feel something has been missed. However what I am proposing to do is to help you to understand why you feel as bad as you do and also to see if we can help you to feel a bit better in the process.

Would that be o.k. ?

Participant

But what if something has been missed that could be easily rectified?

Therapist

From your notes I can see that you have had many tests, none of which point to a simple explanation for your fatigue. It therefore seems unlikely that someone would be able to detect an obvious cause of your problems. Although I can see the temptation of seeking further clarification of your problems, in reality what can happen is that you end up feeling more confused. I believe that your fatigue is a symptom of a bigger picture and I would like to spend some time discussing my thoughts on this matter with you. I wonder how you would feel about that?

Participant

Well, I suppose it wouldn't do any harm!

Therapist

What I suggest that we do is to get a large piece of paper and write down what we do know about your illness, including your symptoms, what was happening at the time you became ill and ways that you have been managing to deal with your illness to date. This information may help us to look at factors that may have triggered it and factors that may be involved in keeping it going. I hope this will help us to make some sense of your illness together before we move on to discussing ways of overcoming it. Would you give my suggestion a go?

Participant

Yes

Therapist

Great. Then maybe that would be a good place to start this session."

[5] Formal erudite critique/complaint re PACE by Professor Malcolm Hooper - details of which can be read by following the paper-trail at these web-links: http://www.meactionuk.org.uk/magical-medicine.htm http://www.meactionuk.org.uk/Further_Articles.htm

[6] Professor Bruce Charlton – Zombie Science – a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018: Available online at: http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

- ENDS - PERMISSION TO REPOST -

Factual Inaccuracy, Dr Shepherd and the UK MEOpathy Association by Kevin Short

On 22 December 2010 I posted an item on CoCure entitled "Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS..." The text was also posted on various other websites.

The text was also posted on various other websites. The CoCure post detail is as follows and the post is reproduced in full below as reference to it is important for what I have to say in this post. I gave permission for my post to be reposted. CoCure Item #024356, 22 December 2010, ACT: Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS... http://www.co-cure.org

On 24 December 2010, Dr Charles Shepherd of the UK Myalgic EncephalOPATHY Association posted an item on CoCure entitled "MEA coverage of the latest research on XMRV." The CoCure post detail is as follows and the post is also reproduced in full below as reference to it is important for what I have to say in this post. Note that Dr Shepherd clearly states that his post "MAY BE REPOSTED". CoCure Item #024367, 24 December 2010, ACT: MEA coverage of the latest research on XMRV http://www.co-cure.org

In his said 24 December post Dr Shepherd says "Before anyone else sends me an abusive email over Christmas please could they note that the statement that has been sent round the internet by Kevin Short relating to the ME Association coverage of the latest XMRV research findings published in Retrovirology contains a number of factual inaccuracies."

I would firstly wish to make it clear that I do not condone anyone sending Dr Shepherd abusive emails and would emphatically advise all ME patients NOT to do this.

Secondly, Dr Shepherd says that my said statement " contains a number of factual inaccuracies." He goes on to say "The ME Association did not commission or request a commentary on these papers from Professor Tony Pinching. This commentary was provided for the Kent and Sussex ME Society. The link to the Kent and Sussex ME Society is clearly included at the end of the commentary."

For the record, I did NOT say that Professor Pinching's article was commissioned exclusively for the Myalgic EncephalOPATHY Association. Neither did I say that the MEA requested Pinching's article, as Dr Shepherd seems to be claiming I did. Moreover, I pasted the Pinching article, as it appeared on the MEA website, in full - and within my posting and at the end of the Pinching posting it clearly states "Professor Anthony J Pinching", "21 December 2010", "Prof Pinching is a medical advisor to the Sussex & Kent ME/CFS Society", "www.measussex.org.uk". I therefore gave as much information about the source of the article as the MEA website did.

My phrase "Pinching just happened to provide an "XMRV Update..." article (see below) for the Myalgic EncephalOPATHY Association" is subject to semantic interpretation here. Pinching was the author of the article the MEA website published and Pinching has a direct and long-standing association with the Kent & Sussex ME/CFS Society [1 -see endnotes below]. Given Dr Shepherd is emphatically saying "The ME Association did not commission or request a commentary on these papers from Professor Tony Pinching" then one has to conclude someone sent it to the MEA of their own accord. Presumably it therefore was the Sussex & Kent ME/CFS Society / Pinching that sent the article to the MEA? Perhaps Dr Shepherd and his Myalgic EncephalOPATHY Association can specify which?

Dr Shepherd goes on to say "We believe in publishing a wide spectrum of information and opinion in our news section. We do not believe that we should censor material because we take the position that people with ME/CFS have a right to know what a variety of clinicians and researchers are saying about new research findings involving XMRV - even though they may not agree with the opinions being expressed."

Let me be quite clear, I emphatically do not believe the MEA should engage in censorship either, I never called for this and it is misleading if Dr Shepherd is claiming that I did. I also most certainly think that UK ME patients need to be aware both that Professor Pinching is presenting demonstrable misinformation relating to gamma retroviral research and should be aware of his questionable role in ME matters more generally[1 - see endnote below]. How the Pinching article got to the MEA is a minor point. My primary complaint against the Myalgic EncephalOPATHY Association website was, and is, that when crucial gamma retroviral research was, in my view, misrepresented in the Retrovirology journal and certainly misrepresented in much of the mainstream international press from 21 and 22 December respectively, The MEA website emphatically did NOT give "a wide spectrum of information and opinion in our [its] news section." On the contrary, it gave prime coverage on the matter on 20 & 21 December to two highly misleading and controversial articles, first from the Wellcome Trust Sanger Institute and second from Professor Pinching:

" New UK study casts doubts on the link between XMRV and ME/CFS by tonybritton on December 20, 2010 Press release issued by the Wellcome Trust Sanger Institute, 20 December 2010 Chronic Fatigue Syndrome is not caused by XMRV New research shows XMRV virus is a lab contaminant A virus previously thought to be associated with chronic fatigue syndrome is not the cause of the disease, a detailed study has shown. The research shows that cell samples used in previous research were contaminated with the virus identified as XMRV and that XMRV is present in the mouse genome..." http://www.meassociation.org.uk/?p=3548

"XMRV update: comment from Professor Tony Pinching by tonybritton on December 21, 2010

Since the original study suggesting a possible link between CFS/ME and the XMRV retrovirus, there have been six published reports from reputable groups in three continents that have failed to find evidence of this virus. These studies have used appropriate techniques in well characterised CFS/ME patients. One study found evidence of two different retroviruses, the significance of which is unclear.

Four very recent further studies (two of them including as author one of the original commentators on the first report) have provided strong evidence to suggest that laboratory and/or reagent contamination are the likely explanation for the original findings..." http://www.meassociation.org.uk/?p=3581

Please note: In spite of the fact that both Dr Judy Mikovits and Dr Kenny De Meirlier immediately posted rebuttals to the Retrovirology articles (they were so misleading that Dr Meirleir quite rightly called them "a crime against humanity") and that these rebuttals were posted widely on ME lists to which Dr Shepherd subscribes, The MEA website did NOT carry their comments to balance those of the Wellcome Trust Sanger Institute and Pinching. In fact, in spite of my drawing Dr Shepherd's attention to such MEA website imbalance on 22 December on the UK LocalME weblist, to which he subscribes and to which he responded, the MEA website still did not correct the imbalance and then went on to post further one-sided disinformation the next day in the form of coverage by the BBC:

" ME, or chronic fatigue syndrome, ‘not caused by virus’, say researchers – BBC News by tonybritton on December 22, 2010

From BBC News Online (story by Helen Briggs, health reporter). Updated version of story first published on 20 December,2010.

A new study has cast further doubt on the idea that a virus called XMRV causes chronic fatigue syndrome. US scientists linked the condition, also known as ME, to a mouse-like virus in 2009 after finding it in blood samples. Now, UK experts say the discovery was a “false positive”, caused by cross contamination in the lab. The illness may still be caused by a virus, they say, but not the one at the centre of recent controversy. "Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome,” said Professor Greg Towers..." http://www.meassociation.org.uk/?p=3601

I hope that readers will take detailed note that it was not until AFTER I and others had publicly and strongly complained about the balance of the Myalgic EncephalOPATHY website coverage of the Retrovirology Journal's and others claims on "XMRV Contamination" that some of that balance eventually began to be redressed on the MEA website from December 23rd onwards. I simply do not believe such delay in giving balanced coverage on such a crucially important matter is good enough given all the money the MEA receives from ME patients in order to act as its advocate. Many other ME organisations that receive much less funding, or none at all for that matter, were able to give more balanced website coverage - including the Mikovits & De Meirleir rebuttals. Why not the MEA? Particularly given it has a de-facto role as a virtual media clearing-house in the UK given journalists look to its website for as a main source of ME/CFS comment.

That is why I said "Where is the editorial comment from Dr Shepherd and his MEOpathy Association giving a more balanced view of matters and pointing out the blatant inaccuracies in Pinching's article? Pinching's article and the MEOpathy website it is on is not only failing to do right by ME patients it is misleading both them and the public. With 'friends' like that who needs enemies?"

The fact is, not only was Dr Shepherd and the MEA failing to post balancing and important comments by Drs Mikovits and De Meirleir and others on December 22nd on the MEA website, Dr Shepherd was actively drawing attention to the said highly misleading article by Professor Pinching. If the MEA do not "censor" on their website then they were certainly engaging in poor, imbalanced and misleading editorial practice in not posting the comments of Mikovits and De Meirlier.

My complaint in my said posting of 22 December therefore was "Dr Charles Shepherd is posting on the internet (LocalME UK at Yahoo Groups 22 December 2010) notice of the fact that Professor Pinching just happened to provide an "XMRV Update..." article (see below) for the Myalgic EncephalOPATHY Association on the day that five decidedly dodgy "XMRV is all just lab contamination" papers/articles appeared courtesy of Retrovirology (followed the day after by further outstanding examples of grossly imbalanced British Journalism on the matter at the BBC, Guardian and elsewhere)."

As said, I did NOT claim the Pinching article was provided exclusively for the MEA and my posting contained information on the Sussex & Kent ME/CFS Society source. I think that my primary concerns on its content and MEA website imbalanced coverage of it were fully justified.

I also stated in my said 22 December post that "I think that UK Myalgic EncephaloMYELITIS patients would be much, MUCH better off giving their money to the charities 'Invest in ME' and 'ME Research UK' than to the decidedly failed and lukewarm so-called advocacy outfit that is the Myalgic EncephalOPATHY Association." I emphatically stand by such views. The one major oversight was that I should have added that, in my humble opinion, UK ME patients would be much better off in the long rung giving money to the Whittemore Peterson Institute for research than to the Myalgic EncephalOPATHY Association. I am happy to correct that oversight now. Please DO donate to the WPI at: http://www.wpinstitute.org/help/index.html

Kevin Short. 25 December 2010.

Permission to repost

Pinching at the MEopathy Association - XMRV has no role in ME/CFS...by Kevin Short

Dr Charles Shepherd is posting on the internet (LocalME UK at Yahoo Groups 22 December 2010) notice of the fact that Professor Pinching just happened to provide an "XMRV Update..." article (see below) for the Myalgic EncephalOPATHY Association

on the day that five decidedly dodgy "XMRV is all just lab contamination" papers/articles appeared courtesy of Retrovirology (followed the day after by further outstanding examples of grossly imbalanced British Journalism on the matter at the BBC, Guardian and elsewhere).

Professor Pinching concludes in his MEA article: "The current view of informed observers is that the research evidence does not support the idea that XMRV or other retroviruses have a role in the causation or manifestations of CFS/ME."

What utter rubbish! " informed observers"! If you want to know what genuinely informed observers really think then go to:

Call me a cynic but such Pinching/MEOpathy coverage seems more than a tad imbalanced to me and out of place for an organisation that's supposed to be advocating for sound science and proper treatment for ME patients. Where is the editorial comment from Dr Shepherd and his MEOpathy Association giving a more balanced view of matters and pointing out the blatant inaccuracies in Pinching's article? Pinching's article and the MEOpathy website it is on is not only failing to do right by ME patients it is misleading both them and the public. With 'friends' like that who needs enemies?

Here's a personal opinion for free. I think that UK Myalgic EnephaloMYELITIS patients would be much, MUCH better off giving their money to the charities 'Invest in ME' and 'ME Research UK' than to the decidedly failed and lukewarm so-called advocacy outfit that is the Myalgic EncephalOPATHY Association.

Do yourself a favour and read the section on British ME charities in 'Corporate Collusion' at:http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

Enough is enough.

Kev Short contact@angliameaction.org.uk

[Permission to repost].

Latest summary from XMRV and Immune System of CFS patients in Barcelona by Irsi Caixa Presentation of Dr. Juliá Blanco

With regard to the detection of retrovirus XMRV, Dr. Juliá Blanco words were prudent denoting the wisdom of scientists. Basically They confirm that YES, they have found XMRV, although depending on the technique applied, they have found it in 7, 3 and two patients respectively.

The worst part is that the lack of standardized methods for the test, as Dr. Blanco himself commented, that is the reason of disagreements between the different scientists who are lagging behind XMRV.

Obviously, if there is no funding, no research, as is happening to themselves as well, Can Ruti researchers said.

They have been able to not only detect XMRV sequences in patients with ME / CFS, AIDS patients and healthy people, but the Dr. Cabrera has been able to infect, in the laboratory, human tonsil tissue. It is therefore, an infectious virus for the human species. Nonetheless, with this study so limited in funding and number of participants, there are many things to know:

  • How is transmitted (although I would think that like other retroviruses, blood, semen, fluids)
  • If the in vitro antiretrovirals used (AZT, Ral, Ten) will also work in vivo (in people)
  • If Antiretrovirals will work on a virus, that we still do not know if it acts like HIV (ie infecting cell and destroy it) or as the HTLV (another retrovirus that immortalizes cells and provoque cancer)

In terms of infectiousness and prophylactic measures, He recommends the use of condoms during casual encounters, which LigaSFC and ASSSEM recommend that prophylaxis in all cases.

As for the immune system of patients with CFS / ME Well, we knew this would be the "hot potato". Not surprisingly, the 9 ASSSEM components, some of which are also part of the LigaSFC as its president and vice president, Lídia Moterde, came with T-shirts that said: SFC = IMMUNODEFICIENCY T8

ALL THE IMMUNE CELLS show abnormalities (B Cel, T and NK Cel)

  • B cells are found in small amounts as well as the IgG they produce. He details even more saying that both IgG's cells are found in small amounts those that could be produced and those being produced at that moment.
  • The NK cells (NK or Natural Killer Cells). They maintain baseline function unaltered, ie perform their function of cell destruction. Nonetheless there are two abnormalities in patients with CFS / ME: A degree of activation slightly above normal and A marked reduction of CD57 in the 11 patients analyzed, so that could be used as a marker to validate these patients, according to Dr. Blanco.
  • T cells, or CD4 (Or T4) are divided to a slower pace (unlike the case of HIV). The CD 8 (T8 or those of T) have two abnormalities: they also divided more slowly (although not as much as CD4) and they present in a very high quantity a marker called CD5 Bright whose presence indicates ANERGY, which is understood as a lack of response by these T cells in the presence of pathogens and / or uncontrolled growth of cells (cancer)

Therefore these would be the first biomarkers for CFS / ME:

  1. Marked decrease in CD 57 in NK
  2. Pattern of anergy with high amount of CD5 Bright on CD8 (T8)

Source: LigaSFC: http://ligasfc.org/index.php?name=Ne...rticle&sid=379

If you want to support Irsi Caixa progress in their studies XMRV and the immune system of patients with CFS can make a donation to the following account:

Account No: 2100 0325 05 41 02001422
Concept: SFC XMRV STUDY
Beneficiary: Foundation IrsiCaixa
Address: Carretera de Canyet s / n 08916 Badalona (Barcelona)
Contact: Lourdes Grau lgrau@irsicaixa.es

The Ministry has denied Irsi Caixa Grant to further investigate the XMRV and the damage it can cause the immune system, we ask you to sign these petitions to the Government:

http://actuable.es/peticiones/pedimo...evo-retrovirus

http://www.petitionbuzz.com/petitions/xmrv