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ME Research UK withdraw from UK CFS/ME Research Collaborative

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Hmmm, I always thought patriachy meant men in power.... it appears we are using different definitions for the same word.

Here is the definition from Wikipedia:

Feminist theory defines patriarchy as an unjust social system that enforces gender roles and is oppressive to both men and women.

Anti-feminist ranters on the interwebs (NOT you!) like to redefine feminist-associated terminology to stupider things in order to strawman it. "The patriarchy" refers not just to the way that feminine traits aren't valuable in women, but that men are tormented for showing the slightest hint of traditional femininity. Women, on the other hand, are praised for displaying masculine traits like "toughness". Why? Because the masculine is the ideal to which we all should strive, and the feminine is weak and useless. Just by having a chronic illness, you are flouting traditional masculinity! How dare you! :rolleyes:

First it was probably dissmissed as women being emotional but now I think bad science, financial insentives, and lack of test/biomarker are the main factors in this.

In the doctor's office, on a one-on-one basis, being dismissed as "just" being too emotional has resonance and immediate meaning for nearly everyone who writes, here. Obviously it is a significant concern for us.

The thing is, ME/CFS does have lots of research on it; that research continues to be ignored. Just look at the headlines every time we discover something new:

ME/CFS Not In Your Head After All!

There is a perception problem that persists, even in the face of good science.

Finally there is no problem discussing this as an issue of gender and fighting for biomedical research.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
POTS has objective tests and so is treated more sensibly than ME/CFS

No with the whole Medically Unexplained Symptoms agenda there's a move in the UK to lump a whole list of conditions together and try to act towards them as they've been treating us with ME (i.e. Pass over to psych and give only CBT/GET). In this list are explainable conditions such as POTS and EDS, (I'm probably getting a bit confused between threads here about who knows what!). Most of the conditions are majority female/young people. This is where the reliable witness thing comes in.

There are many (autoimmune) diseases which affect far more women than men. It's biochemistry which drives this I should imagine. I don't think any metaphysical discussions are necessary. We don't need to apologise for a biomedical gender bias.

Hmm I wonder if I'm not explaining this well? This is the opposite of what I mean. It's nothing we need to apologise for, it is an institutional/society bias against us. I'm precisely pointing out that it is these mainly female autoimmune type illnesses which are the target of this neglectful practice, in the uk anyway.
 

Molly98

Senior Member
Messages
576
There are many (autoimmune) diseases which affect far more women than men. It's biochemistry which drives this I should imagine. I don't think any metaphysical discussions are necessary. We don't need to apologise for a biomedical gender bias.

I think that campaign on the MUS thing as a women's issue may be the only way to counter this. It is huge now and the pace of it just seems to be gathering. I know it also affects a lot of men in the same way, of course it does, I am not suggesting for a minute that it doesn't, but this campaign needs to be wider than ME, wider than invisible illness, it needs to get a big section of the mainstream population fired up and up in arms.

If the focus were to be on the gender issue with MUS, for every woman affected, there are husbands, fathers, sons who are supporters and may also join the fight. To have any real effect it has to impact as a wider section of the population as possible.

Generally, unless people have first-hand experience of ME, either themselves, a close family member or a friend, people don't generally want to know. But if a campaign, for example, raised the issue of women's cancer being missed because of MUS, this is far more likely to cause concern and a reaction.

Everyone cares about cancer, everyone knows someone with cancer and a majority of the population has a fear of getting cancer or family getting cancer. This is also true. Cancer can and is missed because of these MUS ideas and policies. Cancer is also missed by doctors who tell women symptoms are all in the head, just because they are female, or that it is just their hormones.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Message from David Tuller.

Dr. Edward Sykes, from the Science Media Centre, is an observer with the CMRC executive board. It has been suggested on Phoenix Rising that Dr. Sykes urged Dr. Holgate to issue the statement of "full support" for the CMRC's embattled vice-chair, Dr. Esther Crawley. With the withdrawal of ME Research UK from the collaborative, it appears that this "full support" was apparently less than "full." Given the transmission of such misinformation, I am trying to track down what happened. This morning, I sent the following e-mail to Dr. Sykes and the entire CMRC executive board.

Dear Dr. Sykes--

Last week, Professor Holgate informed me that Dr. Crawley had the "full support" of the CMRC board, despite her ill-advised slide-show in front of the nephrologists. However, the subsequent announcement from ME Research UK that it was withdrawing from the collaborative, effective immediately, suggests that this statement of "full support" was in fact inaccurate even as Professor Holgate made it. While ME Research UK did not state that Dr. Crawley's recent antics prompted its withdrawal, the timing of the announcement obviously leaves little room for doubt.

This raises the question of why Professor Holgate provided me with what could be called "inoperative" information. As both a journalist and public health professional, accuracy in communications is important to me. And when I am provided with apparently inaccurate information, I like to understand how that happened, and why--just as my fellow journalists in the U.S. are trying to figure out who said what to whom, and when, in the Trump administration.

Professor Holgate's statement of "full support" certainly implied, at least to me, that he had canvassed the entire executive board beforehand. Given the subsequent evidence suggesting that the statement was not accurate, I now need to question whether such canvassing, in fact, occurred.

On the Phoenix Rising forum--where the thread about Dr. Crawley's recent public spectacle has attracted an astonishing 31,000 views--it has been suggested that Professor Holgate issued the statement specifically at your urging. I have no idea, of course, if this is so. Can you confirm if this is the case?

If so, can you explain whether you yourself canvassed the entire board? If you didn't make the suggestion for the statement, can you shed any light on the sequence of events that led to this apparently inaccurate information being disseminated? I will be posting a blog on these recent developments early next week, probably Monday.

Thanks much--David

David Tuller, DrPH
School of Public Health
Graduate School of Journalism
University of California, Berkeley
 

Aurator

Senior Member
Messages
625
The National Institute for Clinical Excellence decides on treatment policies.
Is there an organisation of that name, in fact? I ask with no intention of splitting hairs, but because the acronym NICE I'm familiar with apparently stands, somewhat ineptly and with the kind of vacuous spin you'd expect, for the National Institute for Health and Care Excellence. https://www.nice.org.uk/about
The name you have used is surely too straightforward and honest to describe what NICE these days is in practice all about.
 
Messages
2,158
Here's my little theory on the patriarchy issue.

The origin of the psychologising of women's illnesses as hysteria has roots way back in history, but specifically for ME, the psychiatrists McEvedy and Beard in 1970 decided the Royal Free outbreak was mass hysteria purely on the grounds that the majority of sufferers in this particular outbreak were women.

Then Wessely took over and ran with it, along with White, Sharpe and others. So far all men.

Some of the current worst perpetrators are women who seem to have swallowed the nonsense uncritically. I wonder whether this is because most of the women involved at a high level with this are not doctors.

Chalder (a nurse) and Moss-Morris (a psychologist) probably don't have the fundamental medical knowledge to read scientific biomedical papers, and take the (male) doctor/psychiatrists word for it that the science isn't there. They see the world from a purely psychological perspective.

The anomaly here is Crawley, who is both a doctor and has a PhD in genetics. I'd love to know how on earth she swallowed the BPS nonsense and became so incredibly unscientific in her research methods. It's almost as if she's been replaced by a clone without a brain.

The people actually administering the CBT/GET nonsense to patients are largely psychologists, nurses, physios and OT's - again mostly women and with very limited if any scientific / medical knowledge. They are simply following the handbook unquestioningly. I suspect most of them, seeing patients for perhaps an hour a week for 6 weeks, often in groups, never get to see the impact their advice has on patients.

Sorry, I'm way off topic and rambling.

I'm so pleased David Tuller is pursuing Holgate. Makes my day every time he fights our corner.
 
Messages
2,391
Location
UK
Is there an organisation of that name, in fact? I ask with no intention of splitting hairs, but because the acronym NICE I'm familiar with apparently stands, somewhat ineptly and with the kind of vacuous spin you'd expect, for the National Institute for Health and Care Excellence. https://www.nice.org.uk/about
The name you have used is surely too straightforward and honest to describe what NICE these days is in practice all about.
https://www.nice.org.uk/about/who-we-are
NICE was originally set up in 1999 as the National Institute for Clinical Excellence, a special health authority, to reduce variation in the availability and quality of NHS treatments and care.
 

Large Donner

Senior Member
Messages
866
The anomaly here is Crawley, who is both a doctor and has a PhD in genetics. I'd love to know how on earth she swallowed the BPS nonsense and became so incredibly unscientific in her research methods. It's almost as if she's been replaced by a clone without a brain.

I think she's mentally ill, and I think we should put that to her. There's nothing wrong with doing that and anyone opposed to such a notion would just be anti science and can be accused of stigmatizing mental illness.

If she herself protests it we can just tell her that she just doesn't realize it and is in denial, we don't need proof either way we can just say it. She definitely has a functional disorder.

Failing that as an accepted explanation we can just tell her that she comes from a socially deprived background or was traumatized as a child.

Maybe 60% of deluded BPS proponents make a full recovery with CBT. I think the other 40% who don't recover and see scientific sense should be diagnosed with PRS.

I really think she should be referred to a psychiatrist.

What a Muppet!
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
Some of the current worst perpetrators are women who seem to have swallowed the nonsense uncritically. I wonder whether this is because most of the women involved at a high level with this are not doctors.

Maybe, but they can congratulate themselves as superior women -- ones who do not succumb to the frailties of their gender. A lot of this seems to me to be driven by self-esteem issues -- as in using the strategy of tearing others down builds oneself up.
 

A.B.

Senior Member
Messages
3,780
The anomaly here is Crawley, who is both a doctor and has a PhD in genetics. I'd love to know how on earth she swallowed the BPS nonsense and became so incredibly unscientific in her research methods. It's almost as if she's been replaced by a clone without a brain.

The BPS model promotes a culture of ignorance, incompetence, and magical thinking.

Beginning with the logical fallacy that failing to find a clearly identifiable organic illness is proof of a psychosomatic causation of symptoms (which ironically is not measurable at all). The entire approach is based on this error.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Maybe, but they can congratulate themselves as superior women -- ones who do not succumb to the frailties of their gender.

So spot-on it stings.

Lisa (a doctor herself) ended up dying due to MUS neglect missing organic illness. This is the type of story which will make people listen.

From that article:

My story is a cautionary tale to all of us health professionals when we get ill. Illness is somehow not the done thing. It upsets our “them/us” belief system, which helps us cope with the horror of what we see. “We do not get ill, they are ill.” We are a lot more military than we realise.

Uggggh.

...unfortunately I had proved a highly suggestible subject during the cognitive behavioural assessment, due to having been trained in CBT myself.

Perhaps this explains Crawley, actually.

Part of CBT is mental training that grooms the participant to expect the miraculous effectiveness of CBT.
 

Large Donner

Senior Member
Messages
866
The BPS model promotes a culture of ignorance, incompetence, and magical thinking.

Beginning with the logical fallacy that failing to find a clearly identifiable organic illness is proof of a psychosomatic causation of symptoms (which ironically is not measurable at all).

Its even more magical now, you don't even need to look for an organic illness and even when one is diagnosed like POTS or EDS its still psychosomatic. On top of that you can just make some telephone inquiries and diagnose people over the phone whom you have never met or spoken to and who haven't even presented themselves to a doctor with symptoms.

You can then get money for writing up studies using the imaginary patients and conclude that people with a different condition to the one you imagined will recover from the same treatments that you claim work in a meaningless cohort.
 
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Messages
2,391
Location
UK
I read within PR some time back a BPS brigade's email trail that debated use of the term CFS/ME versus ME/CFS. My impression from that was they settled on CFS/ME because of the implicit prominence this gives to CFS, and its tacit implication of there not being a real illness.
Could not find the article the original email-trail was reproduced in, but I did find this:-

http://www.margaretwilliams.me/2008/facts-re-get.pdf
This term (“CFS/ME”) was coined by these psychiatrists and was used in the Chief Medical Officer’s Working Group Report on CFS of January 2002 to which they were advisers. The source of the term was explained thus: “It may seem that adopting the lay label (of ME) reinforces the perceived disability. A compromise strategy is ‘constructive labelling’: it would mean treating chronic fatigue syndrome as a legitimate illness while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the Chief Medical Officer’s report of the term CFS/ME reflects such a compromise” (B Fischhoff, Simon Wessely. BMJ 2003:326:595-597).
Cannot help thinking "constructive labelling" to be a mis-spelling of "constructive libelling".
 
Messages
2,391
Location
UK
The anomaly here is Crawley, who is both a doctor and has a PhD in genetics. I'd love to know how on earth she swallowed the BPS nonsense and became so incredibly unscientific in her research methods. It's almost as if she's been replaced by a clone without a brain.
I suspect consuming ambition, shortage of empathy, and deeply manipulative tendencies might play their part.
 
Messages
2,087
I read within PR some time back a BPS brigade's email trail that debated use of the term CFS/ME versus ME/CFS.
If it's what I am thinking if it's a email trail from the CMRC.

Again on Saturday 12th January, Stephen Holgate sent another email: ”To all: One point that
I would like a view on is the terminology: CFS/ME or ME/CFS, NHS, NICE and MRC use CFS/ME. I wish to be consistent so can I have a view from all please. I will then make any
changes (including the name of the collaborative!)” (quote 6)
• Simon Wessely was on the list of recipients. He replied: “Thanks for asking. I think we should stick with CFS/ME frankly. Keeps it in line with MRC and NICE. Journals certainly
only use CFS. USA doesn’t use ME at all. CFS/ME seems to be the best compromise.
Nervous that ME/CFS would alienate one or two researchers not actively involved in area but who you would like to see involved.” (quote 7)
• This view was endorsed by Peter White “…… I agree with Simon that CFS has to lead. The hybrid CFS/ME allows the broad church that encourages generalizable research, while
allowing stratification where necessary.” (quote 8)
• Sonya Chowdhury, CEO of Action for ME (AfME) replied “ … my preference is that we use
ME/CFS and I suspect if we were to ask members, there would be a preference for this form from them too. However, I am prepared to work with either as the importance here is consistency and collaboration and if the general view differs, I will go with the majority.”
(quote 9)
• The MEA stated a preference for ME/CFS but that they also were “happy to accept the majority view on this”. (quote 10)
• MERUK’s preference was also for ME/CFS, they added “we use ME/CFS as do the patient-based campaigning charities.” (quote 11)
• On 21st January Stephen Holgate emailed the group, “After undertaking a poll for preferences of a title, the CFS/ME terminology seems to be the option most wish to go for.
It seems that the NHS, Research Councils and NICE use this terminology as do the majority on Pubmed. I hope we can now accept this.” (quote 12)
• The Collaborative thus became the UK CFS/ME Research Collaborative (UK CMRC).