Public Complaint "Action for ME"

June 25, 2018

PUBLIC COMPLAINT ACTION FOR ME www.memanchester.wordpress.com/afmecomplaint

PUBLIC PETITION for Charity Commission (anonymous option):

https://you.38degrees.org.uk/petitions/patient-complaint-about-charity-action-for-me-charity-commission


I will send this direct to Action for ME CEO and Chair Board of Trustees when the petition has been public for a few days.

Karen Morris, 24th June 2018

https://memanchester.wordpress.com/afmecomplaint/​

 

 

 

The charity was set up in 1987 as The M.E. Action Campaign, with the name changing in 1993 to Action for ME. Sonya Chowdhury took over as Chief Executive of Action for M.E. in September 2012.

In 2016, Action for ME sent a letter to the NIH, protesting the decision by the NIH to host a lecture by Edward Shorter on the history of ME. This letter was sent on behalf of the "M.E./CFS International Alliance", a group involving M.E. advocates and charity representatives from six countries. A thread on the Phoenix Rising forum lists those originally named as belonging to this Alliance as;

  • Sonya Chowdhury, CEO, Action for M.E., UK;

  • Carol Head, CEO, Solve CFS, USA; Jen Brea, #MEAction, USA;

  • David Mann, President, FM-CFS, Canada;

  • Sally Missing, President, Emerge, Australia;

  • Christina Montane, Board Member, Platforma de Familiar FM-SFC ACAF, Spain;

  • David Cifre, Coordinator, Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain.

The same thread then details how both Solve and #MEAction weren't aware of their membership. The response from the NIH to this letter stated "In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward."

 

 

Action For ME had previously funded the research of Esther Crawley until alternative funding from elsewhere replaced theirs.

 

AFME continue to fund the research of Peter White 

 

AFME have had close links with the insurance industry and psychiatrists who work with the insurance industry and the Department for Work and Pensions.

 

AFME's chairman, Alan Cook, was a chairman of an insurance company.

Michael Sharpe has said "one of the major patient charities (Action for ME) is aligning itself with a more evidence-based approach" in the Unum report of 2002. 

 

AFME also supported the controversial CFS/ME NICE guidelines in 2007 which were opposed by all other patient groups and charities and did not support the judicial review against them.

 

Action For ME did not sign the open letter to Psychological Medicine signed by over 100 signatories including scientists and charities.

 

Numerous patients requested and pursued AFME to sign an open letter to Psychological Medicine in March but after two month delay they issued their statement in May. AFME recently published its response patient concerns regarding the use of CBT and GET and the PACE trial for patients and their failure to sign to the open letter to Psychological Medicine. All major charities from around the world signed with the notable exception of AFME.  Despite repeated requests AFME have still not made a statement about a talk that Esther Crawley, who is a medical advisor and receives funding from AFME, presented at a renal conference that maligned patients and accused David Tuller of libel.

 

AFME did not support or promote the Millions Missing campaign in 2017 and used alternatives but Sonya Chowdhury used the hashtag #MillionsMissing for fundraising for herself and AFME.

 

AFME have obtained money from private corporate donors and used this anonymous corporate donation to fund the work of the controversial researcher Esther Crawley and her Severe Paediatric Study via the charity. This was questioned and criticized by ME sufferers in forums but AFME removed many posts as they claimed they were defamatory for asking such questions and stated it was from "private corporate donor with a specific interest in seeing the alleviation of childhood suffering." In 2018 it was announced that AFME would be returning the money but did not provide a full explanation of the sources of the money and the reasons for doing so.

 

AFME were involved from the beginning by supporting the PACE trial and its researchers from 2003. AFME do not refer to their involvement with the PACE trial now. However archives are available of their involvement. The PACE trial would not have been funded or conducted without patient support, which AFME provided.

  • "Despite the anger in the patient community, the investigators were able to enlist Action For ME, another major advocacy group, to help design the pacing intervention. They called their operationalization of the strategy “adaptive pacing therapy,” or APT."

  • The Oxford criteria was used for PACE trial participation. The PACE trial was designed with input from the charity, Action for ME.

  • "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."

  • "The major innovations in this application include close collaboration with Action for ME."

In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data. 

 

Unlike most charities and many ME charities, AFME does not allow its paying members to become legal members of the charity and therefore have no input into the direction of the charity and voting rights. It only recognizes its own trustees as members.

 

https://adc.bmj.com/content/early/2017/09/21/archdischild-2017-313375

Parents should have been warned about unprofessional providers in Esther Crawley’s SMILE trial.  The providers of Lightning Process in the SMILE trial were not credentialed health professionals and are not bound by ethical codes.

 

Esther Crawley’s overdue publication of results from the SMILE trial  deserves close scrutiny for lots of reasons. But especially for what is said about the supervision and qualifications of Lightning Process practitioners who delivered the treatment.

 

Readers can easily gloss over a seemingly straightforward description of these practitioners in the paper. Yet, a little probing and checking of sources should cause some alarm among the parents who agreed to their children participating in the trial.

 

The details are alarming enough to cause worry about participating in any clinical trial involving Esther Crawley. She does not look after the safety and rights of children in her care.

 

This trial was approved by a number of committees at Bristol University. Assured by those well-publicized approvals, parents undoubtedly assumed that their children were protected from risks and needless exposure to quack treatments or providers not bound by enforceable ethical codes. The children did not have these protections, which should give pause to anyone contemplating allowing their children to participate in a trial regulated by Bristol University.

 

The Lightning Process is a commercial treatment programme which has been promoted as a cure for ME and CFS. A combination of neurolinguistic programming and osteopathy, its exponents claim it can cure the condition in three days.

 

Dr Charles Shepherd, medical adviser for the ME Association, said:

 

“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS.

 

“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms.

 

“Others who have gone through the LP programme, report that they have spent huge amounts of money with no obvious benefit.

 

“It may well be that there are some people with a general fatigue state resulting from stress, emotional or psychological problems who could benefit from a ‘mind over matter’ retraining approach such as this. Such fatigue states are a separate entity and not to be confused with ME/CFS.”

 

“There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.

 

 

http://www.meassociation.org.uk/2017/09/me-association-statement-lightning-process-and-smile-trial-in-young-people-with-mecfs-19-september-2017/

 

 

 

 

The rationale for FITNET-NHS is that many ME/CFS patients live too far from specialists to obtain adequate care. Therefore, CBT delivered through an online portal, along with e-mail communication with a therapist, could potentially provide a convenient answer for those in such circumstances. The SMC press briefing generated widespread and enthusiastic news coverage. The BBC’s breathless online report about the “landmark” study noted that the online CBT “successfully treats two-thirds of children with chronic fatigue syndrome.” According to the BBC story, the intervention was designed “to change the way the children think of the disease.”The BBC story and other news reports did not mention that the PACE trial–a foundational piece of evidence for the claim that changing people’s thoughts about the disease is the best way to treat it—has been publicly exposed as nonsense and is the subject of a roiling worldwide scientific debate. The stories also didn’t mention a more recent paper by the authors of the 2012 study from the Netherlands that was the source of the BBC’s claim of a “two-thirds” success rate.

 

The Countess of Mar, a member of the House of Lords and a longtime advocate for ME/CFS patients, has filed a formal complaint with the BBC to protest its biased reporting on FITNET-NHS. In her complaint, she noted that:

 

 “the BBC coverage was so hyperbolic and it afforded the FITNET trial so much publicity that it was clearly organised as a counter-punch to the anti-PACE evidence which is now gaining world-wide attention."

 

http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/

 

 

 

Here is an open letter written by Dr Speight who was a medical advisor to AYME which was published in a 25% ME Group newsletter stating his reasons for leaving AYME:

 

“Dear all

 

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron.  Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.


In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable.  This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET.  This compromise seems to have helped the psychiatrists to get a new lease of life.

 

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you.  I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.  It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

 

With Best Wishes

Nigel Speight”

 

 

 

 

PUBLIC COMPLAINT ACTION FOR ME www.memanchester.wordpress.com/afmecomplaint

PUBLIC PETITION for Charity Commission (anonymous option):

https://you.38degrees.org.uk/petitions/patient-complaint-about-charity-action-for-me-charity-commission


I will send this direct to Action for ME CEO and Chair Board of Trustees when the petition has been public for a few days.

Karen Morris, 24th June 2018
https://memanchester.wordpress.com/afmecomplaint/​

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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