Invest in ME Newsletter October 2008
October 2008 Nr. 08/10

Welcome to Invest in ME's October newsletter.  

IN THIS ISSUE

MRC Peer Reviewing System
Sheila's story - status
Caring for Seriously Ill People with ME
Cooperation Between ME Organisations
Journal of IiME

Recent Research

HHV-6 Conference on the Web

"Lost Voices" - the ME Book Project

ME Book - Osler's Web

 

MRC and Peer Reviewing of Research Proposals

We have previously suggested that the Medical Research Council's peer reviewing System of research proposals needs to be overhauled and made transparent. In this way high-quality research proposals into ME, which have been rejected by the MRC, will have a fair chance of being properly analysed and will not be subject to vested interests blocking progress in ME.

So it is interesting that Ian McLachlan has received a reply from the MRC, under a Freedom of Information request, regarding his request for information on peer review reports relating to unsuccessful ME research proposals.

The MRC took almost 3 months to reply.

In his request Ian asked for peer review reports relating to a number of unsuccessful proposals identified in 2005 in response to an earlier Freedom of Information request.

The MRC refused this request on the grounds that the information requested is subject to exemptions under the Freedom of Information Act.
The MRC justified their decision by quoting Section 36(2)(b) and (c) and Section 41 of the act: Effective Conduct of Public Affairs.

The MRC state that their -

"peer review process relies on the provision of highly detailed and sensitive information by both the applicants for grants and those who review them. The MRC considers that the release of reviewers' reports, provided in confidence, would result in a change in the behaviour of those participating in the process (both applicants and reviewers), in terms of the information provided for review, the availability of reviewers and the detail and quality of the reviews provided. Such a change in behaviour would inhibit the free and frank expression of views and provision of advice and would significantly impair the quality of the MRC's peer review mechanism."

We disagree. We doubt there is anything that could damage the MRC's peer reviewing mechanism more than suspicions that well-known psychiatrists are manipulating their positions within the MRC peer reviewing system to avoid funding being given to biomedical research, in favour of those proposals biased toward psychiatric trials. This would also surely affect new applicatants intending to perform biomedical research into ME (and some would argue this is already the intention). 

Opening the results of reviews would remove these suspicions.

The MRC state that applications are provided in confidence to allow peer reviewers to provide free and frank commentary - 
 

"Information provided in applications to the MRC which the applicants and the MRC would not wish to release includes sensitive information relating to preliminary hypotheses and research findings and data, information intended for future publication, commercially sensitive information, and personal data. The expectation and duty of confidence is clearly outlined at the time of application and on referral to peer reviewers who assess the proposal. The ICO recently acknowledged and accepted the requirement for such a duty of confidence to both applicants and reviewers. The release of the reports you have requested would constitute a breach of this confidence and could result in the MRC facing actions for breach of confidence.

Even if, in any individual case, both the applicant and relevant reviewer were to agree to the release of a peer review report which was originally provided in confidence, MRC's view is that the release of that report would have a detrimental impact on the peer review process as described above and would therefore be exempt from disclosure under s36.

Although we believe that all of the information you are requesting is covered by one or both of the above exemptions, as you know, we must also consider whether in all the circumstances of the case, the public interest would be better served by disclosing, rather than withholding, the information. In considering this, we have taken account of the views not only of senior MRC staff, but also of applicants and reviewers, and have considered the wider implications for the peer review process currently operated by the MRC. The MRC's mission is to improve human health through world-class medical research and we support an extremely wide range of research across the entire spectrum of medical research, from fundamental laboratory-based science to clinical trials, and in all major disease areas. Effective peer review is the cornerstone of our mission in providing the mechanism to ensure that public funding is used most effectively to support the best science.

The MRC believes that release of reviewers' reports would have a detrimental impact on the process of peer review across all areas supported by MRC making it more difficult for the MRC to discriminate between proposals that merit funding and those that do not."

And so the MRC considers the public interest is better served in withholding the information which was requested.

IiME feel it is not necessarily the complete details of all applications which need to be made public. It is the accountability of these peer reviewers and their main reasons for failing the proposals, and the appeals process which is in place if an applicant wishes to complain about the rejection which needs to become transparent.

As such the names of all peer reviewers, their vested interests in relation to the specific area of research, their main reasons for failing, or accepting, an application - all of these need to be transparent and open to the public.

The MRC need to remember that which they state on their web site and in their reply to Ian Maclachlan -

"The MRC's mission is to improve human health through world-class medical research "

"Effective peer review is the cornerstone of our mission in providing the mechanism to ensure that public funding is used most effectively to support the best science."

The MRC are patently failing in this mission with regard to ME. The state of funding of biomedical research into ME belies the MRC statements and shows the hypocricy of an establishment organisation which is seemingly lacking in true accountability to the citizens of this nation.

Finally, the MRC reply states - "If you are not satisfied that your request has been dealt with appropriately you may appeal using the MRC's complaints procedure (www.mrc.ac.uk/index/about/about-contact/about-complaints_procedure.htm) or write to the MRC Complaints Officer at Medical Research Council, 20 Park Crescent, London W1B 1AL.

IiME aren't satisfied with this response and will be putting in our own comments to the MRC regarding their reply.

We hope to have their comments in our February 2009 newsletter.

Sheila's Story - Status

In our June newsletter (see here) we mentioned the story of Sheila - another casualty of the establishment treatment of people with ME. Various organisations/charities had failed to provide any help to her. After much work by IiME, which involved continually and repeatedly telephoning and writing letters to the social services, the local MP, the PALS service, hospital and the PCT Sheila has now been granted PCT funding to allow her to be admitted to a clinic where she has been promised she will receive proper investigations into her condition.

We are glad that something is finally being done. However, it was only because IiME went directly to the PCT and complained to PALS that this situation eventually was resolved for her. The only issue remaining to be resolved had been the funding of Sheila's transport to the clinic and IiME even had to force action here to resolve this matter due to lack of responsibility being shown by the proper services.

The NICE guidelines would do nothing to resolve stories such as Sheila's. Far from it! It is probably even worse for people living in London due to the crass and inaccurate description of the illness portrayed by the established and influential CFS clinics in London.

As mentioned in last month's newsletter we have been in contact with several media sources and have included this story (along with providing suggestions and contacts for covering the forthcoming Judicial Review into the NICE guidelines for ME). 

This is one story which we hope will have a happier ending. But it should not be this way. It beggars belief how such a situation can exist in this country in 2008. And yet we know that this is probably the tip of an iceberg.......we are already dealing with another similar case in London. 

Caring for Seriously Ill ME Patients

From our Journal of IiME Volume 2 Issue 1 we thought it worthy to pull out an article which may have been "lost" so we have included it on our web site in its own page - see here.
This is a very interesting and useful article by Dr Sidsel Kreyberg which IiME has helped translate into English.

Sidsel Kreyberg is a Norwegian doctor who has specialised in pathology and is head of the ME Registry in Norway. Dr Kreyberg has conducted a small survey of those caring for the severely ill ME patients. Her article provides a good insight into the difficulties in caring for this group of ME patients in institutions. The normal rules of rehabilitation do not apply to ME patients and it is important to take the lead from patients. Patient experiences are very important and should be listened to.

Eight institutions which had cared for severely affected ME patients were contacted. The objective was to obtain "hands-on" experience of how one could give adequate services in the future for severely ill ME patients, without consideration of existing constraints in resources.

As Dr Kreyberg states quite explicitly "grass roots" experiences especially can be as important as recommendations and therapy suggestions from professionals who do not know what the care situation involves.

Cooperation Between ME Organisations

IiME were recently invited to attend a meeting organised by the Countess of Mar in which she attempted to find common ground between different organisations involved with ME.

On the first occasion we weren't able to make the meeting but we provided the following input by email to the Countess (click here) which stated our position in relation to a number of points requested from all attendees at the meeting and why we feel progress has not been made with regard to ME.

We will have more on cooperation in next month's newsletter.

Journal of IiME

The next Journal of IiME is near to publicaton in November and includes articles from Dr Leonard Jason and Dr Martin Lerner.

Recent Research

A couple of recent research papers have been published.

Dr. Kenny De Meirleir has published a paper identifying an abnormality in IL-17, a cytokine that seems to play an important role in the illness (click here).

Another paper from Sanjay J Mathew et al shows that ME/CFS "is associated with significantly raised concentrations of ventricular lactate, potentially consistent with recent evidence of decreased cortical blood flow, secondary mitochondrial dysfunction, and/or oxidative stress abnormalities in the disorder" (see http://www3.interscience.wiley.com/journal/121471355/abstract).

HHV-6 Conference on the Web

A summary of the recent HHV-6 Foundation conference in Baltimore, USA has been produced (see http://www.hhv-6foundation.org/Baltimore-CFS-Lay.pdf). The conference has also produced a set of films which are available on the web. These can be seen at the following address (http://www.scivee.tv/node/7965/video).

ME Book - Osler's Web

Osler's Web is not a new book and many will already have heard of it or read it. IiME were recently passed a copy and are in the process of reading it. We recommend as many as possible do the same - or request it from a library.

From the review by Maryann Spurgin at http://www.cfids-cab.org/MESA/reviews4.html  

..the most provocative portion of Johnson's discussion concerns the federal research establishment's attempt to manufacture a mental disorder out of a physical symptomatology. In meticulous detail, Johnson shows how bias in the choice of patients, value-laden selection of CFS-related data and prejudicial allocation of research funds permitted government researchers to conclude that CFS was a psychiatric condition, or rather, something more akin to a behavioral problem. If Johnson is correct, then the government's conclusion is a classic illustration of the Thomas Szasz thesis: The concept of mental illness is often a political tool with which society dismisses its inconvenient members.

At the beginning of the newsletter we referred to the MRC's continuing disregard for biomedical research and its refusal to be transparent in its dealings within a systemically-flawed infrastructure.

Osler's Web highlighted the same issues, and others, over ten years ago - the same obfuscation and denial and manipulation is mirrored in today's establishment view of ME. Ms. Spurgin made these sinister points about ME (CFS) from the book in her review of six years ago -

"..Chronic Fatigue Syndrome is a name that reveals just how tenuous the connection between words and their referents can be. Hillary Johnson provides a well-documented account of the politics behind that prejudicial choice of a name"
"..it reports on vast cluster outbreaks of CFS in the eighties."
"Johnson cites the voluminous evidence independent researchers have gathered in support of the claim that CFS is a disease that attacks both the immune system and the brain"
"The disease's clinical severity also emerges from the stories Johnson relates of formerly active men, women and children who, after contracting the malady, became homebound, suffered dementia or seizures, or faced confinement in nursing homes"
"an account of ongoing government efforts to control the nature and availability of information about CFS"
"peer reviewed prospective journal articles, supervised the dissemination of dubiously informational CFS pamphlets to physicians and negatively influenced the allocation of federal research money"

"the psychopathological paradigm of CFS becoming an article of faith among those in mainstream and academic medicine, with physicians who disagreed being threatened with professional ostracism."

"Evidence that CFS was an illness didn't come from federal research money, since  grants were dispersed according to the principle that CFS was not a bona fide disease. Promising grant proposals of dissenters from this clinical orthodoxy were passed over, and one casualty was that the cancer link with CFS was never explored."
 "no amount of money devoted to CFS research seemed to prove helpful in understanding the disease, since the infrastructure was predisposed to dismiss it. Institutionalized intransigence became increasingly obvious"
 "Insidiously, patient organizations themselves were co-opted."

Ms Spurgin states that one of Osler's Web's strong points is its illustration of a propaganda system at work where studies citing negative findings in CFS were readily published, whilst studies reporting positive physiological findings were turned down.

So similar to the MRC strategy toward ME/CFS biomedical research proposals.

 

Tenth year anniversary edition with an update by the author "A relentless, meticulous, and highly persuasive expose by a journalist who spent nine years investigating the medical research establishment's failure to take seriously chronic fatigue syndrome...In a chronology that runs from 1984 to 1994, Johnson crams in fact after telling fact, building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to respond to the challenge of a multifaceted disease for which a causative agent has yet to be found...A compelling, well-documented account..." Kirkus Reviews  

 Crown publish this book and the link to it is here - http://tinyurl.com/58ebnw
Universal have published an updated edition - http://tinyurl.com/64j6tt

'Lost Voices- The ME Book Project

Invest in ME's Book Project - 'Lost Voices' - is now nearing production. Natalie has been spending exhausting amounts of time and effort in perfecting the content and format of the book

Next month we will be revealing details of how to order.

We believe this will be a unique product which will help change the perception of ME once and for all - where Lost Voices will be found and heard. 

ME-Bay

Finally our thanks to all those supporters who are continuing to raise money for IiME's work using e-bay. It means a lot to us.

Best wishes to all

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