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

[Wildcat]

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@Glycon ...I find your sematics time and energy wasting .... the issue is Action for ME funding Esther Crawley for research on children with severe ME.

If there is such a contract by which Sonia Chowdhury and AFME are bound to fund Esther Crawley's study ... then that is the first that the ME community (which AFME claims to represent) have heard of it. If there is such a contract... then why have AFME and Sonia not informed the ME population? Such a thing would be expected to have been made public before it was a done deal.
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[RogerBlack]

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If there is such a contract... then why have AFME and Sonia not informed the ME population?

It's cunningly hidden on the list of current research they fund, in the most obvious place on their website.

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

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).

This particular study does not seem particularly harmful, and could even be beneficial.

Prevalence of ME in this group is important.
This does of course assume that the protocols for analysing the results are reasonable.

 

[Wildcat]

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There is nothing about any contract on the AFME link. I have already seen that statement.


Esther Crawley does not diagnose ME. ..She diagnoses children who are tired - she gives them a CFS diagnosis. She gives them advice on sleep, and then says they recover in six weeks.
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Parents of very sick children with ME who have been treated by Dr Crawley, who do not recover with her sleep protocol, state that Dr Crawley then changes the child's diagnosis to one of Pervasive Refusal Syndrome (a psychiatric diagnosis), and then claims the child does not have ME.

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[Woolie]

Dr. Jordan is one of those people that actually works in our favour, by sounding so ridiculous himself. He almost looks like a "plant" intended to caricature that particular viewpoint.

"Jordan moved to Canada four years ago. He grew up in what was then Rhodesia and spent much of his life in Britain."

Probably friends of Wessely. 95% of the time we hear such crap we can usually trace the person to Wessely or to having an UK connection.

Hmm, I noticed that too, @taniaaust1. But then I saw that he lived for some years in the former Rhodesia - presumably as part of a British expat family (who got out when the country "went to the dogs"). Somehow, that conjured up an even more negative image.

 

[Glycon]

Dr. Jordan is one of those people that actually works in our favour, by sounding so ridiculous himself. He almost looks like a "plant" intended to caricature that particular viewpoint.

Amazingly, Dr. Jordan is quite real. Even though his poop-themed letters to editors and lectures to local libertarians make him look like he couldn't possibly be real!

Hmm, I noticed that too, @taniaaust1. But then I saw that he lived for some years in the former Rhodesia - presumably as part of a British expat family (who got out when the country "went to the dogs"). Somehow, that conjured up an even more negative image.

Having an elite made up of Dr. Jordans lord over a racially oppressed people is how you end up with Mugabe.

 

[RogerBlack]

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Action for ME is a charity registered with the Charities Commission. It does need to be stated publicly if AFME has funded research. The members have the right to know. As AFME presumes to speak for UK ME Sufferers nationwide, they have the right to know also. 'Knowing how grants work' has nothing to do with it. It is a charity accountability matter.

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The Charity Members do have the right to know what AFME is funding, and how the decisions are made.
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As I mentioned up-thread - the list of fundees is prominent on their website.
https://www.actionforme.org.uk/uploads/pdfs/research-funding-assessment-process.pdf explains the full process.

This is a typical amount of insight into the decision making process of charities, compared with others.

 

[Wildcat]

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@Glycon

Re your link: https://www.actionforme.org.uk/uploads/pdfs/research-funding-assessment-process.pdf


The list of research fundees is not mentioned, neither are the names of AFME's 'Scientific Advisory Panel'.
In fact there are no names whatsoever mentioned on the link you posted. That link contains an awful lot of charity waffle, but no individuals who may be held accountable.

.AFME is a very small charity with a mere 5,000 members (of a UK ME population of 240,00). Its activities are widely questioned by the majoprity ME population.


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I wonder why you are personally concerned with AFME and its funding of research, in particular research the by Esther Crawley, which is so widely opposed by UK ME patients/activists?
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[Glycon]

@Wildcat I think you have me confused with @RogerBlack - the other guy trying to explain something that should be obvious ITT.

 

[Wildcat]

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Its not that non British people could not have insight, its that non British people may not have the developed and historical knowlege of UK charity operations..... and so may not recognise when UK charities (in fact AFME) are pulling the same strokes they have been pulling for years, to the detriment of the UK ME population.
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[Kati]

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Its not that non British people could not have insight, its that non British people may not have the developed and historical knowlege of UK charity operations..... and so may not recognise when UK charities (in fact AFME) are pulling the same strokes they have been pulling for years, to the detriment of the UK ME population.
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I agree with @Wildcat here, there is a long and complicated history with the UK and those of us who do not live there or have not been sick all that long may not have gotten all the details pertaining to the politics that is going on. And yet, its implications oftentime affect other countries as well including Canada.

I really wish we stayed on topic here.

 

[Glycon]

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Its not that non British people could not have insight, its that non British people may not have the developed and historical knowlege of UK charity operations..... and so may not recognise when UK charities (in fact AFME) are pulling the same strokes they have been pulling for years, to the detriment of the UK ME population.
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"developed and historical knowledge"

I agree, @Kati ! I miss making fun of Dr. Jordan!

 

[Sushi]

Please refrain from off-topic personal bickering and stick to the subject of the thread.

 

[Glycon]

I agree with @Wildcat here, there is a long and complicated history with the UK and those of us who do not live there or have not been sick all that long may not have gotten all the details pertaining to the politics that is going on.

This truism is irrelevant here. What details some of us may or may not have gotten is irrelevant to the general issues. Like the fact that some of our British friends seem to not understand how research grants work, or what constitutes public disclosure.

And what does the duration of sickness have to do with any of it? I have been sick for eight years. That is nowhere near as relevant as my education, research and critical skills - or am I wrong?

 

[Wildcat]

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Except that AFME funding Esther Crawley's research on children with ME is not a "fun" subject.
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Its not a game. Sonia Chowdhury's excursion into sanctioning AFME funding a psychosocial researcher for research on children with ME has placed AFME solidly in the psychosocial camp.
And the vast majority of UK ME patients do not agree. Parents of children with ME do not agree. Its definitely not a fun game.

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[RogerBlack]

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Sonia Chowdhury's excursion into sanctioning AFME funding a psychosocial researcher for research on children with ME has placed AFME solidly in the psychosocial camp.
And the vast majority of UK ME patients do not agree. Parents of children with ME do not agree. Its definitely not a fun game.

This is a data review contacting only physicians, and involving no patients directly, to find prevalances.

They are funding several different studies - the one in question, one on fluid intake, one on mitochondrial DNA, neurophysiology of pain, and have funded studies on immune responses and muscles.
As a major funder of the study in question, they could (and should) have verified that the case definition they will be checking the cases against are sane.

 

[Glycon]

It is really not possible to fund only UK-based studies, fund only research into priority topics, fund only studies approved by the majority of patient activists, and not fund any researchers working within the (long-dominant locally) "biopsychosocial model". Something has got to give.

Complaints that one cannot have one's cake and eat it, too, are not merely intrinsically unhelpful, but also play into the hand of those, who are looking for any excuse to dismiss the patients as impossible to please or to reason with.

 

[AndyPR]

It is really not possible to fund only UK-based studies, fund only research into priority topics, fund only studies approved by the majority of patient activists, and not fund any researchers working within the (long-dominant locally) "biopsychosocial model". Something has got to give.

Complaints that one cannot have one's cake and eat it, too, are not merely intrinsically unhelpful, but also play into the hand of those, who are looking for any excuse to dismiss the patients as impossible to please or to reason with.

Really? I think Invest in ME would disagree with you, unless you'd like to highlight the non biomedical studies that they have funded. And the same with the ME Association, please can you show me what non biomedical studies they have funded or the biomedical studies that they have funded but have had to use BPS researchers to run.

 

[Glycon]

Really? I think Invest in ME would disagree with you, unless you'd like to highlight the non biomedical studies that they have funded. And the same with the ME Association, please can you show me what non biomedical studies they have funded or the biomedical studies that they have funded but have had to use BPS researchers to run.

If you wish to dispute my claim, then I think the onus is on you to show that it is false, no?

 

[AndyPR]

If you wish to dispute my claim, then I think the onus is on you to show that it is false, no?

You made the claims first. If you believe them to be true, let's see your evidence.

 

[Valentijn]

If you wish to dispute my claim, then I think the onus is on you to show that it is false, no?

No.