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New Org!: ME/CFS International Alliance

trishrhymes

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If one wants to read the worst into this, here's one possible explanation.

The BPS crew and their stooge patient groups are well aware they have no validity for ME. However they want to cling on to their reputations and lucrative clinics so they define CFS with the Oxford definition (6 months fatigue).

They set up MEGA to study fatigue, aiming to gather lots of questionnare data they can use as their research playground for years to come, p-hacking to find lots of spurious correlations and using these to pontificate about psychological factors that require their skills to treat, and collecting a blood bank full of samples that unfortunately they won't manage to get further funding to analyse beyond the usual tests that show nothing. And when a real test for MEis developed elsewhere, they can hive off the patients they've accidentally included who do have ME to be treated by other specialists or ignored.

In order to justify this cunning plan they need patient support, and when criticised for not using Internationally recognised definitions of ME/CFS, they have their international alliance up and running ready to praise their work through the mouthpiece AFME.

Bingo! Another 20 years of fatigue clinics. That should see them safely through to the end of their careers.
 

AndyPR

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Is it just me or is that statement from Solve a bit woolly? It sort of clarifies nothing, in fact it leaves me more confused than ever.

Emily Taylor from Solve ME/CFS Initiative says:

“At this time, we have been invited to join the conversation, but nothing formal has been established”

Then Emily goes on to say:

“The letter you refer to was a single action in response to the Dr. Shorter issue where we all stand in solidarity.”

Ummm. I am having great difficulty digesting this. The two statements do not sit comfortably together. Nothing has been established and yet they stand in solidarity on behalf of this so called ‘alliance’ carried out on behalf of all the members listed on AfME’s website.

I would like to know how Solve have determined each of the member positions on this when ‘nothing formal has been established’.
First, Emily explicitly provided her email in order that folks who want to can contact her to ask questions, I would suggest you send her your query. Personally, I think you are reading more into the reply than there actually is. The second sentence you quote refers explicitly to the letter sent about Shorter and the general situation surrounding that, I believe the "we" in that sentence refers to all involved in any way in the ME world who is against Shorter's view of ME, it doesn't refer to the alleged members of the, seemingly non-existent, ME International Alliance.

But that is my personal interpretation, if you have further concerns email Emily at Solve.
 

Jo Best

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I am fairly positive that she knows very much how much the MEGA, Pace and other British Pysch crap is viewed by the scientists, doctors and patients who attended to IAME/CFS conference. The science showing that our illness is very much a multisystemic, very real, possibly autoimmune, inflammatory disease with PEM as a core symptom was overwhelming. The vibe in the air for the four days of this fantastic conference was one of excitement and change coming in the very near future. There is no place for GET and CBT anymore and it was only discussed when being discounted or disproven as being helpful for ME/CFS.

Sonia Chowhdury must have felt like she was swimming in an aquarium full of sharks. My viewpoint on the CBT/GET crowd and the Pysch crowd who think ME/CFS is not real is that are all going to be looking really stupid in the very near future. We are so close now to cracking this disease wide open and once that happens, all those that didn't support us will be a very sad and sorry lot. I can't wait. :)
Hi @Gamboa - none of that science will have been news to Sonya Chowdhury and she's attended the annual international London conference organised by UK charity Invest in ME Research - this is the point about the bio-psycho-social movement which her charity now represents - they can no longer ignore the biomedical - they haven't for some years now - what they do is attribute the bio to psychosocial causes and/or insist that psycho-behavioural therapies can treat the disease by having a positive effect on the biology. This is a decades long campaign by the most influential people in the field of ME or CFS in UK, and which hasn't quite lost its grip on US yet, and as we can see by Sonya Chowdhury trying to form an international alliance of charity CEOs, they're still trying to keep their stranglehold and I'm encouraged by the seeming lukewarm response from Jen B and Solve ME/CFS. I hope the US orgs and influential advocates are aware of the hidden agenda of Action for ME and some other UK ME charities. My point about the bio-psycho-social protagnosists not being fased by biomedical evidence is summed up by the recent media coverage of Esther Crawley's FITNET trial (Crawley is part-funded and supported by Action for ME and is medical advisor to AYME).

“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.” The Times, 2nd November 2016.
Chair of the UK CFS/ME Research Collaborative (Stephen Holgate) is quoted as saying of FITNET -

'Patients deserve high quality research like this'.
Sonya Chowdhury's counterpart at AYME, CEO Mary Jane Willows describes FITNET as
"hugely important".
 

Chezboo

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@AndyPR apologies as the quote function seems to be eluding me.

You said, “First, Emily explicitly provided her email in order that folks who want to can contact her to ask questions, I would suggest you send her your query. Personally, I think you are reading more into the reply than there actually is”

I agree, it is very likely I am reading too much into the statement (albeit contradictory). Clearly the SMCI as they say have been contacted by AfME but as yet, nothing has been formalised. While I guess they agree in principle to the idea reading between the lines they seem rather caught off guard (to me). But this is yet more imaginings on my part and yes, I could well email Emily but you have already done that.

Your reading of the second sentence was that ‘we’ pertained to the entire ME community, I say in context it reads to me as the ‘alliance’. Could be either, I won’t argue the toss. My point being is that it’s all so vague and we deserve more robust statements in the first instance. Don’t get me wrong, I am aware this may have taken SMCI by surprise and as I’ve said, I support their recent activities but still…is it too much to expect clear cut statements. Especially where AfME are involved.

I lament the fact that the ME community is so often subjected to vague non committal statements. I think we deserve more from our charities. Please note again, this is no comment of the current activities of SMCI which I am very much enthusiastic and in support of, just saying.
 
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Snowdrop

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My viewpoint on the CBT/GET crowd and the Pysch crowd who think ME/CFS is not real is that are all going to be looking really stupid in the very near future.
The issue is; look silly to whom? The fact is they have been looking pretty silly to the ME community for some time and now international scientists. But does this matter so much to them? There is a great deal of isolationism in this part of UK science--the rest of us do not matter. Only when their political masters start to look ridiculous to the rest of the world will they be cut loose possibly until then they are serving their purpose and being awarded for their 'contribution'.

I lament the fact that the ME community is so often subjected to vague non committal statements. I think we deserve more from our charities. Please note again, this is no comment of the current activities of SMCI which I am very much enthusiastic and in support of, just saying.
Yes. It does seem to be a big problem from many areas. Some need to unlearn disingenuous communicating--others need to develop skill at precision and clarity when communicating.

Just off the top of my head, the only advocates who are clear communicators (and not disingenuous) are MEAction and actually Zaher Nahle. There are many individuals of course, journalists, scientists and patients but I was thinking of institutional communications.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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...My point about the bio-psycho-social protagnosists not being fased by biomedical evidence is summed up by the recent media coverage of Esther Crawley's FITNET trial (Crawley is part-funded and supported by Action for ME and is medical advisor to AYME).
Do you have a source for your statement that Crawley is part-funded by Action for ME, Jo?
 

Jo Best

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Do you have a source for your statement that Crawley is part-funded by Action for ME, Jo?
Here is their 'research we fund' page -
https://www.actionforme.org.uk/research/research-we-fund/
with a link to this study led by Esther Crawley -
https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/
I don't follow their activities but I saw the funding question arise on Twitter (I'm blocked by Action for ME on Twitter and Facebook so it must have been a retweet or someone's linked tweet) and that the charity had replied they are contractually obliged to fund Esther Crawley (naturally if they have signed a contract to fund this study, I don't know if there is other work of hers they are funding or plan to fund).
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Here is their 'research we fund' page -
https://www.actionforme.org.uk/research/research-we-fund/
with a link to this study led by Esther Crawley -
https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/
I don't follow their activities but I saw the funding question arise on Twitter (I'm blocked by Action for ME on Twitter and Facebook so it must have been a retweet or someone's linked tweet) and that the charity had replied they are contractually obliged to fund Esther Crawley (naturally if they have signed a contract to fund this study, I don't know if there is other work of hers they are funding or plan to fund).
Thanks, Jo.

I wonder what "contractually obliged to fund Esther Crawley" means. Obliged to whom?

This is the text from Jo's link:

https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/

What is the severe paediatric M.E. surveillance study you're funding about?

Led by:
Dr Esther Crawley

Aims: To measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK.

Dr Crawley says: “We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/ME in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).

“All completed questionnaires, shall be examined by an expert panel to determine whether the diagnoses of severe M.E. is correct or if further information is required. If necessary, we will examine the clinical notes to gather further information or to clarify the diagnosis. This study will tell us how common severe paediatric M.E. is, how it presents and what treatments are offered. We need to know this for future research, and to help inform current and future service provision.”

Cost: £12,000 made possible by a corporate donation to our Clare Francis Research Fund and match-funding with the University of Bristol.

Length of study: 13 months

Study begins: 2016

Background information: Paediatric M.E. is relatively common (0.4 – 2.4% in children) However, the prevalence and incidence of severe paediatric M.E. is unknown. Children with severe M.E. are either unable to carry out any activity for themselves or can carry out only minimal daily tasks such as face washing.

Understanding the epidemiology of severe M.E. is important for future research and for commissioning of specialist NHS services.

-------

Edited to add:

PR thread here (started May 15 2016 by Wildcat):


http://forums.phoenixrising.me/inde...evalence-study-funded-by-action-for-me.44622/
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Don't want to take thread too far off topic, but has it been established who the "private corporate donor with a specific interest in seeing the alleviation of childhood suffering" part funding (6K) this study is?

Why did AfME not name them?
 

AndyPR

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Gamboa

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Hi @Gamboa - none of that science will have been news to Sonya Chowdhury and she's attended the annual international London conference organised by UK charity Invest in ME Research - this is the point about the bio-psycho-social movement which her charity now represents - they can no longer ignore the biomedical - they haven't for some years now - what they do is attribute the bio to psychosocial causes and/or insist that psycho-behavioural therapies can treat the disease by having a positive effect on the biology. This is a decades long campaign by the most influential people in the field of ME or CFS in UK, and which hasn't quite lost its grip on US yet, and as we can see by Sonya Chowdhury trying to form an international alliance of charity CEOs, they're still trying to keep their stranglehold and I'm encouraged by the seeming lukewarm response from Jen B and Solve ME/CFS. I hope the US orgs and influential advocates are aware of the hidden agenda of Action for ME and some other UK ME charities. My point about the bio-psycho-social protagnosists not being fased by biomedical evidence is summed up by the recent media coverage of Esther Crawley's FITNET trial (Crawley is part-funded and supported by Action for ME and is medical advisor to AYME). /


The IACFS/ME Conference is a much larger and longer conference than the annual international London conference and being the most recent had the most up to date research. A lot has happened in the last few months, especially the recent metabolomic papers that have been released. Anyone who could attend this conference and still cling to the idea that GET and CBT works for this illness would have to have an extremely low IQ. There was quite a bit discussed, by the way, that has not been published yet. Suffice to say, there should be exciting news in the coming year.

I can't imagine that Sonya Chowdhury would have been at all comfortable during any part of this particular conference. The patients and presenters there were adamantly against CBT and GET and the disgraced PACE trial was mentioned many times. Everyone was aware what was occurring in the UK and Sonia Chowdhury was probably squirming in her seat quite a bit.

She had to sit through a fabulous acceptance speech by journalist David Tuller ( he won an award) at the Saturday night banquet in which he ranted and raved ( and swore a lot) about the PACE trial and the people in the UK who ran it and who are still supporting it. He received a standing ovation.

If ME/CFS turns out to be an autoimmune illness then there is no way at all that Chowdhury and crew can continue to support psycho-behavioural therapies to treat it. I'm actually hoping that Fluge and Mella will confirm this and that will be the end of all this PACE, GET and CBT nonsense. :)[/QUOTE]
 

Jo Best

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@Gamboa that's really good to hear and it drums home that Sonya Chowdhury can't plead ignorance. She is only an employee of Action for ME though and acts on behalf of the charity trustees as the public face and voice of the charity, as well as ear, so when she reports to the board of trustees what she learned from the conference, this just gives them a better idea how to play their next move. I'm sorry to sound so cynical, I'm not by nature, it's just that I only found out what's been going on when I joined social networking sites in 2010 and have witnessed first-hand since then the lengths to which the UK establishment will go to close ranks and pursue their agenda.

This is much wider in UK than ME/CFS, encompassing all MUS/MUPS/PPS (the so-called medically unexplained) but when those diseases are eventually 'explained' they have that covered by their new 'Integrated Care' model, which is essentially 'no healthcare without mental health assessment and intervention'. The PACE trial was politically motivated to provide evidence to justify policy (the first medical research part-funded by the Department for Work and Pensions) and that motivation is still strong, possibly more than ever with impending privatisation of the NHS.

The UK establishment will cherry pick new evidence from overseas to suit their own agenda and we will see this play out when NICE decides whether to remove ME/CFS from the static list in 2017. If research results (such as the Norwegian rituximab trial) doesn't suit them they will say they need replication of results in UK. This will start the process of a large UK trial which will take several more years and will not impede the BPS agenda.

However, the good news is that Invest in ME Research (IiMER) has been working with Mella and Fluge from the start (and including other researchers working on rituximab in Germany, Spain, Sweden, for example). The UK trial is planned to take place in Norwich (the base for the Invest in ME Research Centre of Excellence for ME). Dr. Fluge and colleagues will visit Norwich in January 2017. The IiMER researchers have been to Bergen previously and PhD student working on the related B-cell research has been there this week. :)
 
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Sonya Chowdry has been trying to form an International Alliance for some time and was in contact with EMERGE, a charity group that represents 3 states in Australia. Members raised concerns and were fobbed off with the claim that this is not a "formal" alliance....
Sonya Chowdry is the mouth piece of Ester Crawley, she is paid to do work for the Collaborative Medical Research Council. Ester Crawley's claims for her CBT for children need to be read to be believed - she appears to think, children may be cured by CBT, the childs mother influences how ill the child is, if the child doesn't recover form CBT the child actually has pervasive refusal disorder (she has published to this effect).
Surveys of parents saying their child is abnormally tired is used by her to diagnose ME/CFS.
Anyone who questions Sonya Chowdry is blocked from the AfME website.
Sony Chowdry appears to totally and fully support Peter White.
An "International Alliance" has the potential to harm patients with this disease.
The most likely scenario is for the International Alliance, to be purported as the mouth piece for patients in relation to the MEGA proposal.
See teh OMEGA petition for reasons why MEGA is a bad idea.
 
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Its really important that Carol Head and Jen Brea are made aware of the history as I'd be stunned if either of them would support Sonya Chowdry if they were aware of the big picture. Sonya Chowdry using the "International Alliance" to voice concern about Shorter, was most likely a way in, to start gaining credibility.....its like all abusive relationships, the manipulator starts off helping and then slowly things go pear shaped.....like a frog being boiled slowly, the person stays in the water....integrity lost/compromised. Living in a country where the biopsychosocial model is rampant and increasing in influence throughout the medical community makes this very disturbing news. We are so hoping that the CDC will update its website and help us.
 

Sean

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The PACE trial was politically motivated to provide evidence to justify policy
After the policy had been in place for years.

Wessely et al came up with this model of ME/CFS (first formally published in 1989), then proceeded to relentlessly insert it into public debate and government policy long before it had been adequately tested, and then continued shamelessly doing so after it had been tested (by PACE, the "definitive" trial,) and been found seriously wanting.

Far as I am concerned, Wessely et al have committed serious fraud. Not misconduct, not mistakes, but actual systematic long-term fraud, using the lives of sick vulnerable people as cannon fodder in their war against reality.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Not quite sure when it happened but unsurprisingly the letter has now been amended to remove all the names of those who were meant to be in the Alliance.
Thanks for taking the screenshot, AndyPR, for monitoring the page and alerting us that the names of "current members" of the "International Alliance" have been removed.

Thanks also to Wildcat for initiating a thread on the issue of the "International Alliance".
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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The list of "current members" has been removed:

https://www.actionforme.org.uk/news/me/cfs-international-alliance-protests-shorter-lecture/

however, the intro above the letter still states:

"Bringing together M.E. advocates and charity representatives from six countries, the M.E./CFS International Alliance has written jointly to the National Institutes of Health, protesting its decision to host a lecture by Dr Edward Shorter on the history of M.E.

Writing in the journal Psychology Today last year, Dr Shorter said that many people with M.E. have “a kind of delusional somatisation, the unshakeable belief that something is wrong with their bodies rather than their minds.”

There has been considerable concern in the M.E. community that such a view should be given prominence, and the International Alliance’s letter adds to growing calls for the lecture to be cancelled.

Sent to Dr Patricia Grady, Institute Director, National Institute of Nursing Research by Sonya Chowdhury, CEO, Action for M.E., on behalf of the M.E./CFS International Alliance, it says..."
[My emphasis]
 
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