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UK petition Keep psychiatry out of research and trials into ME/CFS in the UK

tinacarroll27

Senior Member
Messages
254
Location
UK
Here is a link to a new petition to keep psychiatry out of research into ME/CFS in the UK . ME/CFS is not a psychological illness and yet the Medical Research Council in the UK keeps funding useless treatment trials like the PACE Trial. It is time it stopped and they except that this is not a psychological illness and they started to fund biological research. The petition is to the Medical Research Council in the UK just in case it is not clear. Thank you.

https://you.38degrees.org.uk/petiti...of-research-and-trials-into-me-cfs-in-the-uk#
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I tried to sign this petition, but looks like it only for the UK?

Perhaps you can change the Title to reflect that?

GG
 
Messages
13,774
Is there a danger that the title makes it sound like it's from patients unreasonably opposed to all psychiatry, rather than with concerns about specific psychiatric approaches to ME/CFS?

I realise that Wessely is currently president of the Royal College of Psychiatrists, and it's fair to be pretty critical of UK psychiatry as a field, but people like Mady Hornig are psychiatrists too. I know it is hard to phrase this things concisely though.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Is there a danger that the title makes it sound like it's from patients unreasonably opposed to all psychiatry, rather than with concerns about specific psychiatric approaches to ME/CFS?
Its a certainty that the psych lobby for CBT/GET will get a lot of mileage out of this claim. I agree with the petition in broad terms, but I am still considering whether I should sign it. The MRC will be dismissive of such claims, and may consider them evidence that we need more psych research, not less.

I will have to read the petition very carefully.

I suspect the tactic we should take is to highlight that they are funding research of low merit while research of high merit is not getting funding.
 

tinacarroll27

Senior Member
Messages
254
Location
UK
Your right, it is the methodology rather than just a hate of psychiatrists. I was thinking along the lines of keeping psychiatry out of research as a primary treatment for ME/CFS when that is not appropriate. I didn't mean keep all psychiatrists away from us. I know Dr Lenny Jason is a psychologist and I think he has done great work for us. In the UK they have been using CBT as a primary treatment for the illness to change our false illness beliefs, which I think is not appropriate and that was the message I was trying to get across but I think the title needs modifying to reflect this. If I change the title to "Keep psychiatry as a primary treatment out of research for Me/cfs in the UK" If you have any ideas let me know.
 

tinacarroll27

Senior Member
Messages
254
Location
UK
I have also included this section in the petition to the MRC "The Medical Research Council should stop funding psychiatric trials and research into ME/CFS as a primary treatment and cause of the illness.There is no place for psychiatric research or trials into ME/CFS as a primary treatment for the illness or as a primary cause of the illness, based on the assumption that the illness is caused by false illness belief and de conditioning. Very often these trials use poor quality diagnostic criteria to identify patient groups, including the international discredited Oxford criteria which only needs fatigue as a main symptom. Any research into ME/CFS should use the more accurate Canadian criteria or the International consensus criteria which has PEM (post exertional malaise) as a main symptom. It is inappropriate in light of international medical research demonstrating ME/CFS as a biological illness to elusively fund trails into primary psychiatric management of the illness and does harm to the patient community as well as wasting tax payers money."
 
Messages
13,774
Could have: "Keep the biopsychosocial model of ME/CFS out of research and trials in the UK"?

Maybe: "Stop wasting money on poorly designed biopsychosocial ME/CFS research, and apologise for having done so in the past"

That makes it clearer that the problem is that so much of this research is rubbish. You could have a paragraph on unblinded trials using subjective self-report questionaires as primary outcomes?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Could have: "Keep the biopsychosocial model of ME/CFS out of research and trials in the UK"?

Maybe: "Stop wasting money on poorly designed biopsychosocial ME/CFS research, and apologise for having done so in the past"

That makes it clearer that the problem is that so much of this research is rubbish. You could have a paragraph on unblinded trials using subjective self-report questionaires as primary outcomes?

Once you've started a petition, you can't change the demands (or even too much of the background stuff) because you don't know whether the people who have already signed would have agreed to the new material.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Its not the intent of the petition that is the problem, its the wording in my view. The goal is good. It might pay to get a team together and rewrite and reissue the petition. The wording is mostly OK, but it lacks the proper focus, and what it appears to be focusing on will be a problem for many due to it superficially looking like a blanket denial of psychiatric research, which it isn't.

I think we might also look, at some point in the future, for action from the MRC to insure further low merit studies do not get funded. We might ask how they intend to insure this happens. Its kind of a rhetorical question though.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I'm all for a petition to stop the FITNET trial which started in May. Even though it's already begun I think making a big noise about it will draw attention to the fact that it is clearly a very poor study that will yield nothing useful and it is costing a great deal of money.

Even if the point were to really study fatigue and not ME/cfs as proclaimed--fatigue is not a monolithic concept.
It cannot be studying ME since it in no way involves the use of any criteria that would distinguish the illness.