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Sonya Chowdhury in shock public defence of ME as a biomedical condition ;)

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
By the way, if you read all the materials I quote in this thread, you realize that Dr. Jordan has a bit of a fixation on obesity and feces. Where is Dr. Freud when you need him?! :)
 

Cinders66

Senior Member
Messages
494
Some of the ways Sonya Chowdury spends her AFME time, e g attending a world health conference 2 years in a row in GeGeneva, to me are expensive peripheral, cv filing stuff, at least this is useful. I haven't read it but expect that there's something About The "neglect and injustice" we face,. Pity the uk charities aren't more vocal past 30 years against those in power failing PWME. Easy to get firm and assertive in a letter to a somebody in a journal.
Actually sonyas funding report presentation at the CMRC was good despite being clipped to a 10 minutes quicky, unfortunately it reminded me a little of how I used to do maths, lots of the right ground work sums and info in there with competEly the wrong conclusion, a failure to address the neglect and where it came from,
 

Cinders66

Senior Member
Messages
494
I'm not sure whether AFMEcontribution to the millionsmissing demo coverage made it on here, our funding agencies and DoH called up are told what's what and asked to increase funding, or maybe not ...Yet...

image: http://www.bristolpost.co.uk/images/localworld/ugc-images/276268/binaries/me-generic.jpg

me-generic.jpg




Clare Oden, of Action on ME said she hoped the protest would have a profile-raising effect.

"The shoes say so much - they're a powerful symbol of all those missing lives," she said. "The truth is medical science still understands very little about the condition, which is precisely why there needs to be much better funding for research – and before that can happen, the condition needs to be better understood and accepted as a problem by society.

"That's where this kind of protest comes in."


Read more at http://www.bristolpost.co.uk/100-pa...9755005-detail/story.html#kMVKcIJAquqaPAzD.99
 

RogerBlack

Senior Member
Messages
902
Pity the uk charities aren't more vocal past 30 years against those in power failing PWME. Easy to get firm and assertive in a letter to a somebody in a journal,
Your capital is strictly limited.
Getting too shouty and pushing too far against the grain leads to getting put on the ignore list - absent a massive public campaign.
 

Cinders66

Senior Member
Messages
494
Your capital is strictly limited.
Getting too shouty and pushing too far against the grain leads to getting put on the ignore list - absent a massive public campaign.
I'm not too sure what your comment meant. I compare recent usa approach to ours and think it's better over there, where people speak plainly , but not offensively, demands to the N I H and that's charities and researchers - 30 years being deferential, accepting uk broad cfs churches and accepting such thingsfrom on high as CFS term over ME, the NICE criteria etc haven't served us long term ill well over in uk in my view
 

Kati

Patient in training
Messages
5,497
My rapid response has been published: http://www.bmj.com/content/354/bmj.i5053/rapid-responses
You can give it a thumbs up if you approve:

In response to Dr Timothy Jordan I would like to mention the following:

1) Canada's CIHR (Canadian Insitutes for Health Research) has contributed an average of 11 cents per patient per year for the last 12 years in research, compared to an average of 158$ per pt per year for other chronic diseases similar in disability. This means that the average canadian physician is not relying on science in order to make teir own opinion, but rely on now crumbling Cochrane reviews to make their minds about ME.

2) The very reputable Institute of Medicine declared ME a biological disease, featuring a set of symptoms which is common to all patients and discriminates from other groups of patients who do not have the disease. (1)

3) University of Columbia Institute of Infection and Immunity found distinct cytokine patterns depending on phases of illness that patients went through, an inflammatory phase for up to 3 years after infectious onset, and a subsequent period of immune depletion (2)

4) Recently Dr Naviaux et al published a landmark paper on a distinct metabolomic signature in patients with ME. They found difference in metabolome in males and females but similar in suggesting a 'daur state'.(3)

5) Lastly the PACE trial which was highly pushed by the media as truth, now uncovers the many fatal flaws of what a rigorous clinical trial should be like. The authors changed the recovery requirements mid trial to declare more patients 'recovered'. This change resulted in 12% of the patients entering the trial being already classified as recovered. I invite you to read the compelling body of work from Dr David Tuller in this regard, much more eloquent than mine. (4)

Many say that medicine is both art and science. What you are providing us here in your comment is an opinion, not based on science, but based on what knowledge and experience you have, but this does not represent the opinion of the experts who have worked with ME patients on a daily basis.

The same kind of opinion has obstructed the medical judgement for decades for other diseases, for instance with Parkinson's disease, epilepsy, multiple sclerosis, and stomach ulcers. It takes curious and brave scientists to uncover the truth, facing disproval from their peers, facing government grant refusal, facing publication refusal. The science behind ME is rapidely unfolding, thanks to the current technology and advances in science and medicine, which will make current opinions in regards to this disease rather embarrassing.

Lastly, do not believe one minute that living on insurance or government benefits is an enviable position to be in. Too many patients had to leave behind a career, a life, and family members they loved, and would rather have their lives back instead of living with a disease that so few understand and so few physicians are willing to help with.

(1) http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
(2) http://advances.sciencemag.org/content/1/1/e1400121
(3) http://www.pnas.org/content/113/37/E5472.full
(4) http://www.virology.ws/2015/10/21/trial-by-error-i/

Competing interests: No competing interests
 

A.B.

Senior Member
Messages
3,780
I hope AFME collapses over this. Make room for charities that aren't run by closet BPS apologists exploiting patients.

PS: I understood that money collected by AFME from members secretly funded a Crawley study.
 
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Kati

Patient in training
Messages
5,497
@Kati , a couple of sentences are a poorly worded, but overall I think you've done an excellent job! :thumbsup:

Agreed, i could have done better on conveying the message. Oftentime I realize this after the fact.
 
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worldbackwards

Senior Member
Messages
2,051
I hope AFME collapses over this. Make room for charities that aren't run by closet BPS apologists exploiting patients.

PS: I understood that money collected by AFME from members secretly funded a Crawley study.
Don't think it's a secret:


Christ alone knows why she's giving money to anyone with a track record like Crawley though, who's entire MO seems to be to obfuscate and confuse.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Now I wonder what the terms of the contract are. I mean does 'funding Crawley' extend to the full lifetime of her career? And when was the contract initially set up? Did SC inherit this contract? That's always possible--it would explain some things.

Anyone with legal expertise--are these sorts of contracts generally public access or is their some nondisclosure usually involved?

This kind of information s/b available to people who are members and whose donations fund this contractual obligation.

ETA: cross post with worldbackwards

It still does not clear up why the contractual obligation. When was this signed and why in gawds name was EC offered AfME monies if as S Chowdhury says ME is physiological?
 
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daisybell

Senior Member
Messages
1,613
Location
New Zealand
Now I wonder what the terms of the contract are. I mean does 'funding Crawley' extend to the full lifetime of her career? And when was the contract initially set up? Did SC inherit this contract? That's always possible--it would explain some things.

Anyone with legal expertise--are these sorts of contracts generally public access or is their some nondisclosure usually involved?

This kind of information s/b available to people who are members and whose donations fund this contractual obligation.

ETA: cross post with worldbackwards

It still does not clear up why the contractual obligation. When was this signed and why in gawds name was EC offered AfME monies if as S Chowdhury says ME is physiological?
I think this refers to the severe paediatric ME prevalence study EC is running..
https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/
The funding will have been given, and can't be taken back...
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
I think people are being unfair to Chowdhury. The reason they are funding Crawley at all is, from what I understand, that they currently wish to support research focusing on severe ME specifically, and there simply aren't that many studies for them to fund, especially once you factor in that Action for ME is limited to funding UK-based studies.

The problem isn't with Chowdhury as much as with the general orientation of ME research in the UK.
 
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1,446
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@Glycon and All:-

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Concern about "Being unfair to Sonia Chowdhury" avoids the issue of what is fair to UK ME sufferers, especially about being fair to children with ME.
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Action for ME did a survey in which they asked people what research they wanted funding. Research on children was not amongst the priorities in the survey results; research on severe ME was.
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Esther Crawley's 'SMILE Trial' on the NLP scam treatment, on children with ME was subject of such extensive protest by charities:.... an Official public statement by the Tymes Trust ME childrens charity, and the ME Association, in a Joint Statement which stated the SMILE Trial was unethical ....
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http://www.meassociation.org.uk/stu...ss-is-unethical-says-joint-charity-statement/
"A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust."

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AND a further Statement from the MEA and Tymes Trust about the Unethics of Esther Crawley's SMILE Trial on children with ME:
http://www.meassociation.org.uk/201...-me-association-and-young-me-sufferers-trust/
"We also sent a copy of this statement to the Department of Health with a request that it should be forwarded to the ethics committee that will be examining this proposal. This is because we believe the ethics committee should be aware of widespread concerns being expressed by people with ME/CFS about the trial.

Our statement also contained information about an adjudication from the Advertising Standards Authority and interventions by several trading standards officials – both in relation to therapeutic claims being made for the Lightning Process which we believe the ethics committees must be aware of when reviewing this proposal."

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In addition Esther Crawley's SMILE Trial was subject of Statements of complaint to the National Research Ethics Committee from numerous ME activists, including parents, and from numerous UK ME charities giving cogent and referenced reasons why the SMILE Trial should not be given Ethical Approval. ......
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Those who responded to AFME's more recent survey on which treatments they prioritised had no idea that AFME were contemplating funding research by Esther Crawley, let alone research on children with Severe ME.
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Esther Crawley does not specialise in severe ME - she uses the broadest possible defininition of ME as fatigue or tiredness, which includes children who are tired from lack of sleep, who recover in 6 weeks with Esther Crawley's advice about sleep.
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In addition, to date, AFME have taken no responsibility for its enablement of the PACE Trial.... Sonia Chowdhury declined to aoplogise on behalf of AFME .... what she did state is that the members of staff who involved AFME in the PACE Trial no longer work for the charity, so the charity can take no responsibility.
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That non-response rather begs the question - as AFME staff remain for on average only 5 years - what will happen in 5 to 10 years time when the current staff have left and moved on to other jobs - who then will take responsibility for the decisions of the current CEO/staff about current AFME policy decisions , including funding Esther Crawley to study Severe ME in children..... a study which few, if any, UK ME patients would have agreed to .... if only they had known about the funding before it was a done deal.

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Edit Addition:
This is the ME Paediatrician who parents of children with ME trust with the medical and social welfare, and the legal safety, of their children:
http://forums.phoenixrising.me/inde...r-nigel-speight-gmc-drops-restrictions.47333/

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Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
@Wildcat There is no "avoidance", since (1) these are separate issues and (2) being unfair to those who (however imperfectly) are working on behalf of the UK ME community can only delay fair treatment of the latter.

Forum rageposts (however understandable) may be therapeutic, but they do not help the world at large take you seriously, nor do they encourage people to become involved with this cause. There is a line, beyond which "spreading the word" (however important in general) begins to look myopic through repetitiveness and inattention to context.

Is Action for ME funding MAGENTA? What does Crawley's grant money actually pay for? Was Action for ME completely free in allocating that money? What was known to Action for ME's decision makers at the time the grant was awarded, as opposed to now? How much personal responsibility does Chowdhury have for that allocation? And so on...

But no, let's not ask ourselves unpleasant questions! God forbid we actually come to hold nuanced views or even (shudder!) accept a fraction of responsibility for our own reputation! It is so much more productive to respond to trigger signals with all the predictability (and lack of sophistication) of Pavlovian reflexes! Maybe that'll get people to take us seriously and treat us with respect! ;)

(I guess it's hypocritical of me to complain about rageposts... :))
 
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@Glycon


I am utterly bewildered by the vehemence and content of your last post. The term "forum rageposts" is utterly insulting, and entirely unnecessary in the current debate..
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My post made cogent points in a rational manner, and provided links to relevent material.

Your term "forum rageposts" is not comprehensible in relation to my last post, which was reasonable and referenced. Do you actually have something personally invested in the issue of UK funding of research on children with ME?
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I understand that you are quite recent to UK ME politics which involve children with ME. And perhaps you do not have historical knowlege of AFME actions.
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Have you actually read the Joint Charity Letters denouncing Esther Crawleys SMILE Trial as Unethical? The links which I posted?


There was concern about Esther Crawley's SMILE Trial from outside of the ME community too


'Children should not be used as guinea pigs: Prof Robin Gill, Church Times (Lightning Process Pilot study)'

Shortlink: http://wp.me/p5foE-3ak


'Canon, Prof Robin Gill is a member of the BMA Medical Ethics Committee, has been a member of the Medical Research Council’s Stem Cell Steering Committee, is President of the Society for the Study of Christian Ethics and Chairs the British Sociological Association’s Study Group of Religion.


[In his letter to Church Times, Prof Gill refers to the ASA ruling handed down to a Bournemouth company, in June. This was Lightning Process practitioner, Alastair Gibson (“Withinspiration”). Mr Gibson is a member of the pilot study research team led by Dr Esther Crawley. Fiona Finch (Director, Phil Parker Group) and Phil Parker are also collaborators in the pilot study and all three are listed in the application for research ethics approval and Study Protocol document.]
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There was such widespread concern about Esther Crawley's NLP SMILE Trial on children with ME that the National Research Ethics Committee (NREC) invited concerned individuals and charities to submit evidence as to why the study should not be given Ethical Approval, an unprecedented act by the National UK Medical Research Ethics Committee.

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The decisions about what research AFME funds is taken by the CEO, but the Trustees are also ultimately responsible. In the case of the PACE Trial, the public face of the charity decision to be involved was the CEO (Chris Clark), but such decisions are not taken without reference to the Trustees. By the time the PACE Trial was published, the CEO Chris Clark was long gone. We have seen two more AFME CEO's since then. The short term employment of AFME CEO's (historically only 5 years each) is another reason to question the decisions of AFME CEO's on matters such as funding of controversial research.
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Action for ME was completely free in who they allocated their research money to. The idea that Action for ME had its hands tied and just had to fund Esther Crawley for research on severe ME is nonsense.

Perhaps some time spent researching the charity AFME, its history, actions, its Trustees, its Consitution, and the rather dubious and not wholly lawful nature of of Action for ME's Consitution historically, would clarify things for you.
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That the UK ME community would accept AFME funding research by Dr Esther Crawley, at this stage, is unlikely. And Sonia Chowdhury was under no obligation to fund Esther Crawley's research.




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Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
@Wildcat I don't know why you assumed "rageposts" refers to your post, but it doesn't and you have no grounds for feeling insulted by anything I said.

Also, my vehemence should be self-explanatory. As is yours. I may not agree entirely with how you direct it, but I don't act surprised when I encounter it.

Everything I said, concentrating on content for the moment, I stand by. Please feel free to point out which parts of it you think are factually incorrect. (Alternatively, you may copy-paste something else. That'd be just as productive, I am sure. ;))
 
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1,446
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@Glycon .... you addressed you post #56 to me by name.
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I have read widely online about this specific subject, but have not seen anything which could be described as "rageposts". Where on earth did you see such posts?.... Or are you referring to hypothetical "rageposts", ones that have not actually been written?
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Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
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@Glycon .... you addressed you post #56 to me by name. I read widely online about this specific subject, but have not seen anything which could be described as "rageposts". Where on earth did you see such posts?
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True. But I said many things that clearly do not refer to your post as well. Also, I did just specifically say that it wasn't in reference to your post.

I see no point in debating the semantics of "ragepost". Especially since, like I just said for the second time, it wasn't about yours. And if you claim to not have seen any, then how about you humor me and point out something else I said that you find factually incorrect? ;)