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Correcting some inaccuracies about us and our work

June 26, 2018

We have been made aware of a statement and petition online which raises a number of questions and concerns about Action for M.E.

We would like to make it very clear that this statement contains a significant number of factual inaccuracies and grossly misrepresents the charity, our position and our work.

In responding to questions about the statement, our Chief Executive Sonya Chowdhury shared the following:

“With regards to the parliamentary briefing prepared in advance of last week’s Westminster Hall debate, Action for M.E. worked with three other UK charities who are members of Forward M.E. (the ME Association, the ME Trust and #MEAction) to input to the briefing, and worked collaboratively to agree the first draft. Changes were subsequently proposed by Jen Brea which we accepted immediately as they further clarified some of the points made and strengthened the briefing overall.

“We are very clear that M.E. is not a mental health illness. We recognise that, for some people, their mental health may be affected as a consequence of having such a horrific illness which causes so much loss among so much else. I have seen this first hand through my son, Danny, who has been ill for over four and a half years, albeit that he has started to show signs of some recovery recently. He got M.E. after a chest infection; he did not have any mental health issues and in no way have we ever thought that this was the cause of his M.E.; quite the opposite.

“Through our website and other communications channels, we repeatedly highlight that M.E. is a neurological condition, and we have been working to challenge the inappropriate positioning of M.E. within IAPT, included the move to reclassify it as MUS/BDD/BDS etc. We have engaged with SNOMED and the World Health Organisation (WHO) to that effect, and do not believe that M.E. should be reclassified in any way at this time.

“Collaboration is central to our work and we are keen to work with as many others as possible. We are keen to sign Prof Racinello’s letter to the Lancet regarding the PACE trial, and we are working with the International Alliance for M.E. on a number of activities focused on engaging with the WHO and its Member States.”

To clarify further some of the inaccuracies in the statement:

  • Action for M.E. did not fund the PACE trial, which was funded by the Medical Research Council, Department of Health, DWP and the Scottish Executive.
  • We do not promote any individual treatments for people with M.E. The information we share about graded exercise therapy (GET) and cognitive behavioural therapy (CBT) is not a recommendation about any specific treatment for M.E. but instead aims to support informed decision-making. It is our view that, while potentially moderately helpful for a minority of people with M.E. and/or CFS, these treatments are not effective or safe for everyone, particularly the severely affected. We do not support the NICE guideline’s view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E., given the legitimate questions raised about their safety and effectiveness.
  • We do not recommend the Lightning Process for M.E., and strongly advise people to view with caution any method which claims to offer a cure, has not been adequately researched with peer-review, and requires the payment of large sums of money.
  • Action for M.E.’s Medical Advisers are Prof Julia Newton and Dr Gregor Purdie. This did not change as a result of Action for M.E. merging with the Association of Young People with M.E. Prof Esther Crawley is not, and has never been, one of our Medical Advisers, and we are not funding any of her research.
  • Action for M.E. had no involvement whatsoever in Healthwatch Trafford’s M.E./CFS survey, other than sharing the link with our supporters, and highlighting the results of its subsequent report.
  • Action for M.E. is open to working collaboratively and supporting the work of organisations that share our goals. We attended the launch event of the Greater Manchester Neurological Alliance in 2016, but have no formal partnership in place and have not undertaken any work with them since.
  • The MEpedia page referenced in the statement lists a number of inaccuracies, which we hope to address with the owners of this page.
  • Every Supporting or Lifelong Member of Action for M.E. is invited to vote on the selection of new and returning Trustees, and anyone with an interest in M.E. is welcome to attend our Annual General Meeting – you don’t need to be a Supporting Member. This year our AGM and conference will take place in London on Thursday 15 November; registration will open at the end of the summer.

If any of our Supporting Members, donors, or organisations working in partnership with us have further questions or concerns, please don’t hesitate to contact us directly.