ME Research UK withdraw from UK CFS/ME Research Collaborative

[Barry53]

The thing which really bugs me so much with MUS, is the sheer arrogance of the medical profession to assume only one possible reason for MUS. I can see at least 3, as can anyone I would think, but two of them don't tick the right boxes for them, so they default to hard presumption of the third:-

1. The indications are there, and modern medicine knows about it, but the clinicians have missed them.
2. Medical science doesn't yet understand the problem, maybe not even aware (or in denial) of its existence.
3. It's a psychosomatic problem.

For the medical profession, and government funding policies, DWP, etc, '3' is by far their easiest and cheapest default option. Heads-in-the-sand mode so reinforced, the absolute last thing they can see is that they have their heads in the sand.

 

[rosamary]

The thing which really bugs me so much with MUS, is the sheer arrogance of the medical profession to assume only one possible reason for MUS. I can see at least 3, as can anyone I would think, but two of them don't tick the right boxes for them, so they default to hard presumption of the third:-

1. The indications are there, and modern medicine knows about it, but the clinicians have missed them.
2. Medical science doesn't yet understand the problem, maybe not even aware (or in denial) of its existence.
3. It's a psychosomatic problem.

For the medical profession, and government funding policies, DWP, etc, '3' is by far their easiest and cheapest default option. Heads-in-the-sand mode so reinforced, the absolute last thing they can see is that they have their heads in the sand.

Well said. In a nutshell.

 

[rosamary]

One of the comments on that blog:
"
As another physician, I agree that misdiagnosis is not uncommon and that there needs to be the understanding that doctors do not have a 'crystal ball' when it comes to diagnosing illness. But I think that there is a major issue that this story points out, which is something that happens recurrently and is not, in my mind, justified, which is our excessive tendency to attribute that which we do not understand to psychological causes and/or to avoid giving credence to the organic reality of patients' symptoms.

Having experience in focusing on treating illness that may unfortunately be termed 'functional' such as ME/CFS and fibromyalgia, where various things that I have seen make it abundantly evident that the bigger problem is in our clinical science, not in the patient's psyche, it is incredibly frustrating to see that physicians continue to blow off 'real' symptoms. The fact that one can use psychological techniques to diminish symptoms does not eliminate the fact that organic causes are present. 'Conversion disorder' (which was brought up in this individual's case as well) may belie life-threatening illness.

So yes, there is some sympathy to be had for our inability to make rare or difficult diagnoses, but it is extremely troubling how readily we pick up the psychosomatic card and disregard symptoms we can't explain - even when the patient's history and/or exam should clearly suggest that there is something other than a psychosomatic cause."

So there are doctors out there who see the problem; wish they would speak up more.

I love it when a physician demonstrates perspicacity!!! I've met a few and am always stunned when I do!

 

[Sean]

I personally think we have got to be very strategic in how we fight this MUS thing.

Whatever criticisms can be made about the BPS school, it has to be acknowledged that they have played the politics of it all extremely effectively, especially in the UK. Future historians and students of propaganda will use it as a textbook case.

The thing which really bugs me so much with MUS, is the sheer arrogance of the medical profession to assume only one possible reason for MUS.

It's not like they haven't made this mistake before.

You'd think after the first few hundred times they might have learned something.

 

[Jenny TipsforME]

Is there some way UK patients with all these conditions can band together to launch a real public campaign

It is definitely worth joining together.

I'm working on a new research/advocacy project the Chronic Illness Inclusion Project with Catherine Hale and the Centre for Welfare Reform for people with Spoonie type conditions (which maps quite closely to those targeted by MUS). It is a 3 year project and we're not recruiting participants just yet.

It is the type of project that sees the participants as experts, and will be somewhat led by what they suggest as topics. This means I can't say for certain, but it is very likely we will be covering MUS as this will be one of the main common concerns across our participants.

By the end of the project we'll have a social policy style manifesto for what people with chronic illness want to change. This will be disseminated widely and there should also be journal articles etc.

I hate to say it, but in publicity terms one young straight male pwME is worth at least 5 women. Double that if he has a beard.

Quick find a pwme with a beard!

If sexism/patriachy was eliminated tomorow, do you think we would suddenly all be treated right by our GP?
If a biomarker/test was found tomorrow, do you think we would suddenly all be treated right by our gp?

I don't think anything would be sudden but 1 yes and 2 no. The MUS thing is already targeting people with biomarkers. It is bizarre I know.

Sympathy and protectiveness towards weaker, less reliable or rational creatures is part of patriarchy. It's called paternalism! I feel sorrier for kittens and babies then I do for beardy men but I'm much more likely to overrule their feelings towards their medical treatment. When I see a beardy guy with ME I instinctively consider him less neurotic or delusional.

Yes. It's about credibility/importance not sympathy. We should avoid sympathy that won't get us anywhere.

Sexism is at the centre of MUS targeting illnesses predominantly affecting women. Men with those illnesses suffer the same neglect as the women, and may also have to deal with sexist ideas from medical professionals about how men are supposed to be/act, etc.

Yes. We are not saying something as basic as this is sexism from men to women. It is more complex than that as a dynamic but boils down to a gender bias.

In the case of MUS, this is politically and financially driven misogyny, and it's backed up by ableism and class prejudice.

It requires some unpacking, but there seems to be intersectional stuff going on. It does also bring in issues about only economically active people being of value in society and disablism around that. There's also a weird stereotype about ME being something that young, middle class, white women whine about though it isn't really real...

I know what we need: a greying, black, rich ex-businessman man with a beard to do media appearances!

 

[TiredSam]

Quick find a pwme with a beard!

I would offer to grow a beard but unfortunately one symptom that has developed over my 3 years with ME is that my hair has become too tired to grow any more. First it went grey, then it just gave up the ghost. I'm hoping that when a cure for ME is found I will get my luxuriant strawberry-blond locks back.

 

[Jenny TipsforME]

@TiredSam see ME is dangerously feminising!

is this generally a difficulty for male pwme?

 

[Solstice]

@TiredSam see ME is dangerously feminising!

is this generally a difficulty for male pwme?

Still got a full bush, but my beard is very patchy. So that doesn't make me a candidate either I suppose.

 

[Barry53]

It's not like they haven't made this mistake before.

You'd think after the first few hundred times they might have learned something.

The disturbing inference there is that it is not a mistake.

 

[Barry53]

Still got a full bush, but my beard is very patchy. So that doesn't make me a candidate either I suppose.

Er...mmm ... given the gender issues in play here, that just could be misconstrued?

 

[Skycloud]

It's not like they haven't made this mistake before.
You'd think after the first few hundred times they might have learned something.

The disturbing inference there is that it is not a mistake.

No it's not a mistake and they have learned something - the politics of how to have it their way.

Some of them even seem to think they can include asthma in this nonsense. Asthma. So that's everyone and their dog, then!

 

[Demepivo]

Some of them even seem to think they can include asthma in this nonsense.

It's just as well, the head of CMRC Stephen Holgate is an expert in asthma. Although he is yet to study ME/CFS as his public remarks reveal

 

[Skycloud]

It's just as well, the head of CMRC Stephen Holgate is an expert in asthma. Although he is yet to study ME/CFS as his public remarks reveal

Oh for goodness sake (polite). So why on earth is he interfering with ME then?!!
Don't feel you have to enlighten me, I just struggle to keep up. It's a gift that keeps on giving!

(I'm not aware specifically that any of the CMRC BPSers are after asthmatics; I noticed it come up elsewhere as part of MUS BPS mission creep.

 

[Barry53]

Some of them even seem to think they can include asthma in this nonsense

I'd be very interested to see something tangible on that one, if you've got anything.

 

[Skycloud]

@Barry53 Not sure what you consider tangible.

Somatic illnesses include irritable bowel, dysfunctional esophagus, multiple chemical sensitivity, dizziness or unsteadiness (central vestibular pattern), chronic fatigue, fibromyalgia, glossodynia, vulvodynia, hypothyroidism, asthma, migraine, temporomandibular dysfunction, and intolerances or food and drug hypersensitivity

(my bold)

from:
http://forums.phoenixrising.me/inde...e-whats-happening-across-the-uk.48710/page-29 (post 580, bottom of page)

My family has 9 of the conditions on that list, including asthma, and EDS also discussed elsewhere in the thread. I was commenting out of feeling overwhelmed and concerned by that and other information posted by Dx Revison Watch in that thread. Sorry if I was misleading.

Research into CBT and asthma is reviewed on cochrane.org if that interests.

Hope that answers your question.

 

[Jenny TipsforME]

Of interest? https://medium.com/@CripTheVoteUK/2...ntroductory-tweets-and-questions-39230b88daac

Crip the Vote UK hosting twitter chat on ME and the psychosocial agenda.

 

[AndyPR]

David Tuller has blogged on ME Research UK leaving the CMRC http://forums.phoenixrising.me/inde...inued-me-research-uk-drops-out-of-cmrc.51643/

 

[RustyJ]

The thing which really bugs me so much with MUS, is the sheer arrogance of the medical profession to assume only one possible reason for MUS. I can see at least 3, as can anyone I would think, but two of them don't tick the right boxes for them, so they default to hard presumption of the third:-

1. The indications are there, and modern medicine knows about it, but the clinicians have missed them.
2. Medical science doesn't yet understand the problem, maybe not even aware (or in denial) of its existence.
3. It's a psychosomatic problem.

For the medical profession, and government funding policies, DWP, etc, '3' is by far their easiest and cheapest default option. Heads-in-the-sand mode so reinforced, the absolute last thing they can see is that they have their heads in the sand.

I think you give them far too much credibility. MUS is an invention, a way to tie up these illnesses for the benefit of the DWP and insurance. It has little to do with whether the illnesses collated under the MUS banner are psychological or biological, but whether they can retag them as psychological.

 

[Countrygirl]

Dr David Tuller's new post

http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/

Trial By Error, Continued: ME Research UK Drops Out of CMRC
22 MAY 2017
By David Tuller, DrPH

I have spent two weeks hammering the CFS/ME Research Collaborative about “Renal-gate”—that is, vice-chair Esther Crawley’s recent lecture at a conference of kidney disease experts, in which she falsely accused me of writing “libellous blogs.” The CMRC’s chair, Stephen Holgate, recently assured me that Dr. Crawley had the “full support” of the executive board—a statement I dutifully conveyed to Virology Blog readers.

To be clear, I don’t know what Dr. Crawley actually said in the lecture, or if she mentioned my name. The slide live-tweeted from her talk, which featured the phrase “libelous blogs” near a screen-shot of one of my Virology Blog posts, speaks for itself. (Esther, if I’ve misunderstood and you meant to highlight my post instead as an example of an accurate, non-libelous blog, let me know ASAP.)

Despite the claim that Dr. Crawley enjoyed “full support” from the board, one of the CMRC’s charity members, ME Research UK, announced a few days later that it was withdrawing from the collaborative, “with immediate effect.” ME Research UK’s announcement did not mention Dr. Crawley, but the meaning was clear given the timing and abruptness of the move. So it appeared that the “full support” of the board for Dr. Crawley was likely less than “full” even as Dr. Holgate made the claim.

 

[Barry53]

@Barry53 Not sure what you consider tangible.

Got it now. And hypothyroidism too?!