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ME Research UK withdraw from UK CFS/ME Research Collaborative

Demepivo

Dolores Abernathy
Messages
411
How do you know this?
You pick up snippets here & there just by talking to people. I don't really have any great scoops.

It is obvious that the MEA & MERUK are not happy with Holgate & Crawley. Professional etiquette comes into play so they don't say everything they want to in public.

We are not privy to the flurry of emails going around the CMRC. Guess more will come out in time.

What we can do is write to individual CMRC members with our thoughts especially the charities involved. (if you have the energy).

Personally am glad EC was vain & attention seeking enough to say what she did.
 

Demepivo

Dolores Abernathy
Messages
411
@BurnA it's a reliable source. Obviously I don't want to get them into trouble.

I guess MERUK will expand on their statement & the MEA will say something, enough people have lobbied them.

AfME were sticking to everything it's a group decision a week ago. Sonya Chowdhury will be getting an email from me Monday. I don't expect much but it keeps up the pressure.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
BTW I did clarify some weird wording when I joined as an associate

Members must:

3.1.1 Be located within the United Kingdom,

3.1.2 Deliver or support CFS/ME research either by:including funding research, advising and supporting researchers or as clinicians working with researchers in studies/trials,

3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.

3.1.4 In matters within the scope of the CMRC, to work collaboratively and in a professional manner.

3.1.5 Membership of the CMRC does not prevent any member charity or organisation from pursuing its aims and objectives as laid out in its founding documents.

I said
although I am strongly against the harassment of researchers, does that clause leave room for objecting to research design that I feel may harm ME patients (eg pressure to do GET)?

This was thought to be fine, but to be honest I really thought they'd throw me out over my involvement in #stopGET

I suspect that this was more not noticing rather than thinking it was ok!
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Also I have a suspicion that they (or SMC) have some awareness of the 'optics' in terms of how they officially respond to pwme. I expect a pwme has said something which is more bona fide libellous than David Tuller but (as far as I know) he is a healthy professional so is less sympathetic. If a flimsy libel case was made against someone looking very sick in a wheelchair it would look bad in the newspaper.

The tendency to label disagreement as harassment does worry me though. Personally I have a general rule just not to mention the names of PACE proponents publicly online. This makes it easier to distinguish that I am criticising their research and stated opinions and not them as a person.

Should more threads on PR be in the private members area?
 

rosamary

Senior Member
Messages
131
One individual who advises the DoH is Rona Moss-Morris, who is National Advisor to the Department of Health for IAPT (Improving Access to Psychological Therapies) for LTC/MUS which has been extended to include making funds available for developing integrated IAPT services for long-term conditions and CFS.

Page 3: https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf

https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/

Thanks. This is the type of thing that infuriates me:

'
Unexplained symptoms tend to be more common among:

  • women
  • younger people
  • people who've recently had an infection or physical illness, or those affected by the ill health or death of a relative
  • people who've previously experienced problems such as depression and anxiety
The reason women appear to be affected more than men may simply be that women are more likely to see their GP. And older people may appear to be less affected because many older people don't like to bother their GP.'

Honestly! And these people are health professionals! Women Are likely to be affected more due to their sex hormones. Women are known to be more affected by autoimmune diseases.

And no doubt older people have given up trying to find out what's causing their problems, knowing that if they have too much to do with the medical profession, they may get bumped off or be given even MORE medication for hypertension etc which may cause them to feel unwell or fall over.

The tone of the whole thing is so...subjective and... oh damn it! I know my hormones are dodgy. I'm going to swallow some black cohosh and g&t after reading this.

Money for old rope.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
The reason women appear to be affected more than men may simply be that women are more likely to see their G
I see it the other way around. Women are more affected because these are the conditions they don't take seriously, and women are more likely not to be taken seriously. How do they divvy up the conditions into taken seriously and not taken seriously? Well women and younger people are seen as less reliable witnesses about their own bodies, so conditions which biologically occur more often in these groups are MUS (even if they are fairly well medically explained :bang-head:)

It's the patriarchy man!
 

rosamary

Senior Member
Messages
131
I see it the other way around. Women are more affected because these are the conditions they don't take seriously, and women are more likely not to be taken seriously. How do they divvy up the conditions into taken seriously and not taken seriously? Well women and younger people are seen as less reliable witnesses about their own bodies, so conditions which biologically occur more often in these groups are MUS (even if they are fairly well medically explained :bang-head:)

It's the patriarchy man!

My quotation marks don't show up too well in that post.
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
I see it the other way around. Women are more affected because these are the conditions they don't take seriously, and women are more likely not to be taken seriously. How do they divvy up the conditions into taken seriously and not taken seriously? Well women and younger people are seen as less reliable witnesses about their own bodies, so conditions which biologically occur more often in these groups are MUS (even if they are fairly well medically explained :bang-head:)

It's the patriarchy man!
I wouldn't be so quick to blame it on "the patriarchy".

If this illness had a recognizable biomarker I don't think we'd be in this mess. It's also in the interest of the DWP to propegate the "its just lazy people " meme.

I don't think the problem is "the men in power" as we have seen multiple examples of women in power promoting the psychology aspect , and men, including me, being told time again it's in our heads.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I was a bit tongue in cheek in the way I said "it's the patriarchy man!" In my head @sb4 but I do seriously think gender bias is involved (even for men who have the misfortune to get mainly female conditions, you are tarnished by the association with unreliable females!). Also I'm not suggesting women in power would solve it. Women can absorb sexist bias the same as men.

It clearly isn't down to having a biomarker because EDS is included and that has known genetic mutations. POTS has objective tests and medication which works fairly well (because they have a fairly good understanding of what's going on). POTS is 4:1 female:male.

What these conditions have in common is NOT that they are medically unexplained!
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Why do we accept such crumbs with glee? It's victim behaviour... we've got to stop it.

Eh, it's positive reinforcement. I'm not suddenly delighted with them, but I'd like to reward good behavior. You can bet that there will be others who will withdraw their support because of this decision. Of course, those sorts of decisions are up to the individual, and I would never dream of saying what you should do -- especially given that you have raised money for them in the past and they let you down.

they seem to have a phobia of the name Myalgic Encephalomyelitis

Sounds too official-like.

Prof Newton has been one of the main beneficiaries of MERUK grants and done useful biomedical science with the money from MERUK, the MEA and AfME (on the autonomic nervous system, the heart & vascular systems, build up of lactic acid after exercise)

Newton is by all accounts a good scientist. If she can ease the funding away from more subjective and faith-based research initiatives (just beeelieeeve and you'll be well), great! :)

[Edit: separating my comments]
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I don't think the problem is "the men in power" as we have seen multiple examples of women in power promoting the psychology aspect , and men, including me, being told time again it's in our heads.

"The patriarchy" doesn't mean man, bad, woman, good. It means, in part, that traits and characteristics perceived as feminine are de facto less valuable and meaningful; and that diseases that occur more often in women are mysterious, meant to be endured, not cured, and symptoms are an over-reaction on the part of the patient. Patriarchy says that characteristics of femininity are distasteful -- for sure in women, but all the moreso in men. Women steeped in their culture fall for this just as much as men.

I've read a damning study that said that female doctors are equally likely to trivialize 'women's diseases' as male doctors.

There are lots of illnesses without a single biomarker; they are not all treated in this manner.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Our responses crossed @JaimeS

I've read a damning study that said that female doctors are equally likely to trivialize 'women's diseases' as male doctors.
I'd believe this. In the past I've found it better to go to a male doctor about "female problems". I perceive that female doctors have more of a tendency to think I experience the same as them and this is something to be endured.
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
I was a bit tongue in cheek in the way I said "it's the patriarchy man!" In my head
Sorry its hard to tell on the internet sometimes.
I do seriously think gender bias is involved (even for men who have the misfortune to get mainly female conditions, you are tarnished by the association with unreliable females!). Also I'm not suggesting women in power would solve it. Women can absorb sexist bias the same as men.
I don't think this is a big a factor as the other things I mentioned.
It clearly isn't down to having a biomarker because EDS is included and that has known genetic mutations. POTS has objective tests and medication which works fairly well (because they have a fairly good understanding of what's going on). POTS is 4:1 female:male.
I'm not sure I understand this. POTS has objective tests and so is treated more sensibly than ME/CFS. ME does not have this so is treated idiotically, however both disproportanitly affect women. Which is the point I was trying to make...?
"The patriarchy" doesn't mean man, bad, woman, good. It means, in part, that traits and characteristics perceived as feminine are de facto less valuable and meaningful; and that diseases that occur more often in women are mysterious, meant to be endured, not cured, and symptoms are an over-reaction on the part of the patient. Patriarchy says that characteristics of femininity are distasteful -- for sure in women, but all the moreso in men. Women steeped in their culture fall for this just as much as men.

I've read a damning study that said that female doctors are equally likely to trivialize 'women's diseases' as male doctors.

There are lots of illnesses without a single biomarker; they are not all treated in this manner.
Hmmm, I always thought patriachy meant men in power.... it appears we are using different definitions for the same word.

I'm unaware of these other diseases but I think a lot went wrong with ME to get us where we are. 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.

I think if we missdiagnose the problem, then we wont be able to fix it. If all effort is put into patriachy argument then maybe people will not think biomarker is such a big deal and maybe not invest in the research.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I perceive that female doctors have more of a tendency to think I experience the same as them and this is something to be endured.

Yup. I agree. That, or they feel like they have to over-compensate, to prove that they -- like male doctors -- are wise to women's wily ways enough to know not to take them very seriously...
 
Messages
2,391
Location
UK
they seem to have a phobia of the name Myalgic Encephalomyelitis
Not so easy to deride as sounding self-inflicted, compared to Chronic Fatigue Syndrome. 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.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Not so easy to deride as sounding self-inflicted, compared to Chronic Fatigue Syndrome. 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.

Yes, that would be the email between Strauss and Fukuda (US) I believe.