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Please sign! 6037 signatures so far!
Stop the HHS-IOM and Accept the CCC Definition https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/
Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond.
Dr. Lee was a lightning rod for criticism and controversy. During her term as DFO, we saw violations of the Federal Advisory Committee Act and heard credible allegations that Dr. Lee intimidated several members of the committee for expressing their views (an HHS investigation found no wrongdoing). Dr. Lee was also blamed for the move to hold CFSAC meetings by webinar and for contractor incompetence in managing those meetings. Perhaps the two most glaring controversies were Dr. Lee’s apparent leadership role in the creation and funding of the Institute of Medicine contract, and for publicly admonishing ME/CFS advocates for their vitriol and instructing us to call out those advocates out. As a result of all this, the relationship between the ME/CFS advocacy community and the DFO of CFSAC has deteriorated to the lowest point I have ever seen it, and there were formal requests to have Dr. Lee replaced.
August letter sent to the NIH Pathways to Prevention Working Group:
We, the undersigned organizations representing ME/CFS patients across the U.S., are writing to express our concern about two issues. This is a follow up to a letter sent earlier (July 25, 2014) by others in the community who have highlighted the same issues.
1. We see a significant gap in the draft agenda for the P2P Workshop on ME/CFS. Specifically,
discussion of case definitions has been relegated to a 20 minute presentation ("Case Definition Perspective") outside the context of the Key Questions and Panel discussion.
We strongly urge that the P2P Workshop Agenda be modified to include a full examination and public discussion of this original Key Question: Do the set of ME/CFS definitions encompass the same disease, a spectrum of diseases, or separate discrete conditions and diseases that do not belong together?
It is absolutely essential if the NIH expects to have the results of this study accepted by
the ME/CFS patient and advocate community that this foundational question be given
sufficient time for a full discussion.
Existing data suggest that the several case definitions identify patients with depression, deconditioning, other non-specified fatiguing conditions, as well as a disease characterized by post-exertional malaise. This lack of diagnostic sensitivity obscures the true nature of the disease described by patient s by blurring the distinctions between disparate conditions. There is also a significant and real risk that uncareful use of various nonspecific definitions may lead to including people who have missed diagnoses of major medical diseases which are treatable if properly diagnosed.
We believe that discussion of existing research literature, the prevalence, natural history, treatments, gaps in research, and the rest of the agenda will only be effective if it is grounded in a thorough discussion and understanding of the problems and issues caused by the xistence of multiple case definitions which are being used interchangeably.
You can see the justification for this request here. It is unfortunate that the timing of the P2P study was not better coordinated with the Institute of Medicine study, which is considering this very question in depth.
2. According to the P2P timetable, the final report will be issued in draft format and open for public comment for two weeks between approximately Dec. 12 and Dec. 25. Given the comment deadline coincident with the Christmas/New Year holiday period, and considering the disability of the ME/CFS patient population, we urge the group to provide accommodation for that disability by extending the comment deadline for an additional two to three weeks, for example until January 15, 2015, if the comment period begins on Dec. 11.
Granting this accommodation would not interfere significantly with the P2P process flow, but would enable the ME/CFS patient community more time to study the report and provide thoughtful, meaningful and necessary input. This will enable a better set of recommendations and would be much appreciated by the patient community, for whose benefit this study has been undertaken.
Signed by PANDORA Org and six other patient organizations with special thanks to Massachusetts CFIDS ME & FM Association.
Thursday, 28 August 2014
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- ‘Coming out’ about the harassment has led to increased support for CFS/ME researchers, for example, from colleagues who were not aware of the situation.
· (quote 16)
- Harassment is most damaging in the form of vexatious FOIs.
- Complaints are also causing problems. Researchers are dealing with complaints about them to the GMC.
- House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses
· (quote 17) …. Researchers are using strategies to reduce the impact of harassment and put the case for research into CFS/ME incuding:
- Learning about the FOI Act and using strategies to reduce time spent responding, eg putting minutes of meetings onine
- Coming together as a research community to respond to criticisms eg the joint letter in response to criticisms of Simon Wessely receiving the John Maddo prize.
- Working with trusted journalists to cover the problems associated with CFS/ME research
- Esther Crawley and Stephen Holgate are establishing a research collaborative including researchers, charities and other interested parties. There will be a launch event on 22nd April.
· (quote 18) from Action Points
- SMC—run FOI Act brainstorm
- ALL—look for opportunities to publicise CFS/ME research and give background information about the condition
- Support4rs—work with Peter White and Simon Wessely to develop resources for deaing with harassment
- SMC—run a press briefing on biosocial illness to provide public understanding. Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris.
Subsequent action by the UK CMRC can be seen in the context of these Action Points (above).
· One SMC ‘strategy’ to reduce ‘harrassment’ was to “put minutes of meetings onine.”
Following the 22nd May 2013 meeting of the Executive Board of the UK MRC Sonya Chowdhury emailed “Hi all—please find attached the meetings of our meeting and a summary for public consumption. I have deliberately made the summary detailed so that people don’t feel we’re only providing limited information…In the future, I would suggest that the summary is approved by the Chair and Vice Chair so that they can go up immediately after the meeting.” (quote 19)
- 3rd June, Sonya Chowdhury to group “As agreed we can now share the above summary [CFSMERC minutes 23.5.13”] on websites etc. and the minutes are for the Board only. (quote 20)
- 11th October, Sonya Chowdhury to group “Hi All—please find attached: Chair-approved minutes of our meeting on Monday; Chair-approved summary notes of the meeting which will go on our website, as previously agreed.” (quote 21)
- 14th January 2014, Sonya Chowdhury to group “Attached are the chair-approved minutes (for the Boar only) and the summary notes (for pubic consumption).” (quote 22)
· Re the SMC Action Point regarding “opportunities to publicise CFS/ME research and give background information about the condition” (reference quote 18); on 17th April Esther Crawley informed the Collaborative that the press release regarding the launch had been rewritten and “hopefully incorporates most of your comments. I hope this is now the final version.” (quote 23)
· She clarified that this press reease concerned the launch of the Collaborative, and not the press conference, which was to take place separately. Journalists were sent a separate invitation to the press conference. She explained: “journalists wil already have received this invitation from the SMC about the press conference (pasted below).” (quote 24)
· The press conference invitation ‘pasted beow’ began—“Science Media Centre News Briefing—What? Chronic Fatigue Syndrome—unravelling the controversy” (quote 25)
- It stated “Chronic Fatigue Syndrome (CFS; also known as ME) is an incredibly controversial field, not just in terms of public perception, diagnosis and treatment but even for the very researchers trying to help who have experienced campaigns of harassment from some patients.” (quote 26)
- It went on to state that “The disease affects over 600,000 people in the UK” inviting journalists to come aong to find out amongst other thing “What imaging studies are showing us about overactive brains”. (quote 27)
- For further information journalists were asked to contact Dr. Edward Sykes, Head of Mental Health at the Science Media Centre. (quote 28)
· Dr. Chares Shepherd of the MEA objected in an email of the 17th April:
- 1. I stil don’t believe it is sensible to drag the harassment campaign into the press reporting of the launch of the collaborative …I just don’t see what is going to be achieved by encouraging journalists to include this aspect in their reporting of the event. (quote 29)
- 2. Could we also include myalgic encephalomyelitis (or encephalopathy) in the title and CFS/ME elsewhere. (quote 30)
- 3. I don’t know what ‘overactive brains’ are in relation to ME/CFS. Sounds a bit like anxiety …. I don’t think this is a good term to be feeding the press. (quote 31)
· The response from Esther Crawley was “Just to clarify—the SMC invitation was included [in hr previous email] just to explain why we have done the press release as we have. It is not for pubic consumption. It has already gone out.” (quote 32)
· Further to the SMC Action Point regarding “opportunities to publicise CFS/ME research and give background information about the condition” (reference quote 18): on 12th March 2014, Esther Crawley emailed to the group: “There is a competition to present research to Parliament. The aim is to provide information about research to try and ensure funding is secure for next year. If successful the winners will have posters about projects with demonstrable benefits in parliament at a reception on June 3rd this year.” (quote 33)
- “I have prepared an application (attached) with help from both Stephen and Peter for the CMRC. We have only 300 words to describe a “project” which has already had health benefits. Looking at previous successful applications, they expect very lay friendly descriptions of projects that tell a story. As it is only 300 words, I have included snippets about research that I am familiar with that has already had health benefits (the category I think we should submit under)” (quote 34)
- “Stephen has obviously helped me a lot with this. Although we have mentioned the harassment, this is part of the previous story and is to help identify what is new and different at the moment…..” (quote 35)
- “The deadline is Friday but I will need to submit it tonight …. So if you have any comments, can you let me know as soon as possible? Can you please copy Stephen in please?”(quote 36)
- The original draft of the 300 word description by Esther Crawley, Stephen Holgate & Peter White included “In the past, the CFS/ME researchers and charities have been divided, with researchers leaving the field because of personal attacks and funding difficulties.” (quote 37)
- The final submission included: “…Research has been a powerful tool for change in the UK with a small amount of funding producing significant health benefits. For example, in children and teenagers, we have shown that it is common, occurs in primary school children; is more common in those from socially disadvantaged families and is very treatable with excellent outcomes. In adults we have shown it is more common in UK ethnic minorities, described inequalities to accessing health care and shown which treatments are safe and effective. This research evidence-based approach has encouraged more commissioners to provide services and helped clinicians to improve services, increasing the number of children and adults offered treatment. (quote 38)
- After Esther Crawley had sent the draft version out to the Collaborative for comment she sent another email to Stephen Holgate and Peter White: “As you can see—I have sent the form to the executive. I mentioned the harassment bit in the email because early feedback suggested this might be a problem with the charities (sigh).” (quote 39)