ME Research UK withdraw from UK CFS/ME Research Collaborative

[rosamary]

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.

I think you are right.

And emphasize that lack of investigations instigated by primary care cause many deaths

And that all this MUS stuff is just laziness. It's a cop out. It's not scientific. It's make-believe. It's wasting tax payers' money. It's killing people. Etc etc

 

[Wolfiness]

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 think if the ratio was 4:1 male we would have a biomarker by now. There's the patriarchy.

As @Jenny TipsforME implied, women are more affected by conditions not taken seriously because women's conditions are a priori not taken seriously. It's circular. 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.

The DWP's Disability = Weakness = BAD mentality is also, as @JaimeS indicates, at least tangentially patriarchal. Patriarchy is the pervasive consequences of men in power.

 

[Deepwater]

I think you are right.

And emphasize that lack of investigations instigated by primary care cause many deaths

And that all this MUS stuff is just laziness. It's a cop out. It's not scientific. It's make-believe. It's wasting tax payers' money. It's killing people. Etc etc

Agree. Is there some way UK patients with all these conditions can band together to launch a real public campaign?because our charities just don't seem to be getting the word out effectively. Having said that, I'd have no idea where to start.

 

[JamBob]

What I find so incomprehensible is that doctors, scientists and skeptics get all up in arms about what they call "woo" such as superfoods, crystal healing and "quack" cures. Yet they seem to uncritically accept the concept of MUS without any empirical evidence for its existence. MUS should be as big an issue for the skeptic community as homeopathy.

It would be great if we could set up a campaign encompassing all MUS diseases and provide doctors with a critical approach to the MUS construct. I suppose we could build a website, start a competing journal, send some people to the MUS conferences to lecture on the poor state of the evidence for MUS, get a chapter in a medical textbook. Start conferences of our own. Send people to medical schools to lecture the students. We'd need some kind of acronym in order to communicate in a way that psychs can understand. Perhaps...... MUSFUK.

DOI: Pre-ME, I had a couple of known and understood, life-threatening disease misdiagnosed as MUS (with explicit reference made during the misdiagnoses to my gender and the prevalence of such "functional symptoms" in young women). The experiences have left me scared to go for consults now as I expect to be dismissed and patronised "as a woman".

 

[JamBob]

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'm intrigued by this too. With psychs like Wessely it is easier to understand how they ended up as MUS peddlars because psychiatrists train in a medical discipline that is well known for its lack of scientific rigour.

If you look at EC's publication record, she was publishing more serious work presumably related to her Phd, then there is a gap of around 4 years and then the CFS publications started.

What happened to EC? Could be the plot for a novel.

 

[Wolfiness]

It's easy to be scientifically rigorous if that's the orthodoxy in that field. All it is is adherence to authority. Look at the fun the Bad Science forum had trashing PACE critics while imagining themselves to be free thinkers.

 

[Molly98]

Agree. Is there some way UK patients with all these conditions can band together to launch a real public campaign?because our charities just don't seem to be getting the word out effectively. Having said that, I'd have no idea where to start.

Perhaps we have to start it with a small group of us on here putting in the ground work, starting a campaign, a website and then building links with another patient organisations whose conditions are being branded MUS and getting a number on board from each one. Then tackling media, particularly those that are likely to be interested in women's issues and equality. I also think taking a gender angle will appeal to academics also in the areas of social science, possibly politics.

I have chatted to @Countrygirl before about the need to set up a website - twitter/facebook called ME Watch where ME sufferers can publically record any time they have been wrongfully treated, dismissed, ignored, neglected by medical staff. Something that is both a record but also can be viewed by media and public so they really see what it is we are up against and the prejudice that they face.

Perhaps this is what we need to do for MUS so that there is a public record that can be viewed by all including the media of actual accounts where people, where misdiagnosed, not diagnosed, dismissed, denied treatments, ridiculous accounts of CBT false illness beliefs etc.

I take this Idea from the Everyday Sexism campaign which was started by a woman named Laura Bates where women everywhere would catalogue their accounts of the everyday sexism they face on a website, twitter and facebook. It really took off and helped to give recognition to what women and girls were up against on a daily basis, at school, work, socially, within families and got a lot of media coverage

https://everydaysexism.com/

This way there are also continuous stories for the media to pick up on, they do not need to go searching for them.

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

 

[sb4]

Here is the definition from Wikipedia:



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!



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.

I dont want to come off as a dick but thats not how most people use the word patriachy and its not how the dictionairy uses it either "a system of society or government in which the father or eldest male is head of the family and descent is reckoned through the male line."

I don't necessarily disagree with what you said about masculinty been seen as good etc but I think you need a new word to decribe this.

"
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!"

I agree with this however I think it's not correct to assume that it's the patriachy/sexism as the reason why this stuff gets ignored. We have seen this throughout history is research. Ego, financial interest, lack of biomarker/test are all factors that contribute to this research being ignored and I think these factors are more important than sexism.

@Wolfiness
" 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."

I highly doubt this. I know I personally have more inate sympathy if I where to see a girl ill than a guy, it's not right but thats just my gut feeling and I think others are like me.

"
The DWP's Disability = Weakness = BAD mentality is also, as @@JaimeS indicates, at least tangentially patriarchal. Patriarchy is the pervasive consequences of men in power."

Let me ask you this

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?

 

[Countrygirl]

Perhaps we have to start it with a small group of us on here putting in the ground work, starting a campaign, a website and then building links with another patient organisations whose conditions are being branded MUS and getting a number on board from each one. Then tackling media, particularly those that are likely to be interested in women's issues and equality. I also think taking a gender angle will appeal to academics also in the areas of social science, possibly politics.

I have chatted to @Countrygirl before about the need to set up a website - twitter/facebook called ME Watch where ME sufferers can publically record any time they have been wrongfully treated, dismissed, ignored, neglected by medical staff. Something that is both a record but also can be viewed by media and public so they really see what it is we are up against and the prejudice that they face.

Perhaps this is what we need to do for MUS so that there is a public record that can be viewed by all including the media of actual accounts where people, where misdiagnosed, not diagnosed, dismissed, denied treatments, ridiculous accounts of CBT false illness beliefs etc.

I take this Idea from the Everyday Sexism campaign which was started by a woman named Laura Bates where women everywhere would catalogue their accounts of the everyday sexism they face on a website, twitter and facebook. It really took off and helped to give recognition to what women and girls were up against on a daily basis, at school, work, socially, within families and got a lot of media coverage

https://everydaysexism.com/

This way there are also continuous stories for the media to pick up on, they do not need to go searching for them.

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

I think this to be an excellent idea @Molly98.

I think it calls for a brainstorming session with a small group dedicated to this idea.

First, I wonder if we should start a thread on PR where people can record their experiences when encountering an ME-denier in a medical consultation? This could then be expanded to incorporate the effects of the MUS concept to other well-established medical conditions, including the gender-bias, by, as you suggest, using FB. I for one could write a small book after 40 years of having this illness and listening to 30 years' of other peoples' experience in support groups and on the phone.

There is a book in this!

It could form the raw material for a document on the serious consequences of the psychologizing of a major illness which could be used as supporting evidence.

I am going to soak my grey cell in more caffeine while I ruminate on this idea....................

How about starting a new thread on your proposal, @Molly98 ? I think your idea has mileage. Go for it!

 

[trishrhymes]

Hi @Molly98, and @Countrygirl, I really like your idea of setting up a web site devoted to people telling their stories of medical mistreatment and its consequences. As you say, this could then become the 'go to' place for the media and campaigners to help try to bring about change. This needs to be specific to conditions and patients dumped by doctors in the MUS / PPS bin, and/or pushed into IAPT type treatments including CBT and GET.

The stop GET campaign are doing well in collecting and publishing some people's stories specifically about their bad experiences of GET and its consequences, and I hope these would be included.

But this needs a wider scope, including examples of people treated badly by medical staff, refused tests or treatments for coexisting conditions, etc.

We need to get the whole IAPT and MUS, PPS etc. juggernaut sent over a cliff.

I think @sb4 makes some valid points. I don't think the focus on the web site should be on arguments about patriarchy, sexism etc, though some campaigners who use the site may choose to focus their particular campaigns on this aspect.

I'm in!

Edit:
The website could also have sections for each condition that has been called MUPS - ME, EDS, POTS, FM, IBS etc and links to the latest biomedical research and to published articles about research. This means any journalist has the whole 'package' available in one place. ~And contact details of experts willing to be interviewed.
Our version of the SMC!

 

[Molly98]

I think this to be an excellent idea @Molly98.

I think it calls for a brainstorming session with a small group dedicated to this idea.

First, I wonder if we should start a thread on PR where people can record their experiences when encountering an ME-denier in a medical consultation? This could then be expanded to incorporate the effects of the MUS concept to other well-established medical conditions, including the gender-bias, by, as you suggest, using FB. I for one could write a small book after 40 years of having this illness and listening to 30 years' of other peoples' experience in support groups and on the phone.

There is a book in this!

It could form the raw material for a document on the serious consequences of the psychologizing of a major illness which could be used as supporting evidence.

I am going to soak my grey cell in more caffeine while I ruminate on this idea....................

How about starting a new thread on your proposal, @Molly98 ? I think your idea has mileage. Go for it!

Thanks @Countrygirl, I am a bit wiped out from the whole MUPPETS thing and in need of recharging, so back off to bed in a sec. But just a couple of thoughts before I go.

Even if it is a few of us on here who get our heads together to initiate something I think it needs to start on a website separate from and independent of PR.

We can not afford for the BPS lot who have the ears of the media and are in a lot more powerful position to right from the offset manipulate and control the narrative - that it is just a bunch of troublesome, angry ME militants, always the same group of trouble causes. We don't want to give them any ammunition. You know how bloody easy it was for Crawley to paint a frightening and derogatory picture of us, and however wrong it is, it sticks unless these people have their implanted beliefs about us changed by actually having interaction with us.

If anyone wants to start a thread please go ahead, I am likely going to be pretty absent for the rest of the day.

Apart from a small group of us to throw ideas around and try and get something started we would need someone who could set up website and social media. These skills would be essential and this is definitely not my strength.

We could crowdfund to raise some initial funds to set up a really decent website and social media campaign and/ or even for some PR, marketing advice.

 

[Countrygirl]

"trishrhymes, post: 852335, member: 26868"]Hi @Molly98, and @Countrygirl, I really like your idea of setting up a web site devoted to people telling their stories of medical mistreatment and its consequences. As you say, this could then become the 'go to' place for the media and campaigners to help try to bring about change. This needs to be specific to conditions and patients dumped by doctors in the MUS / PPS bin, and/or pushed into IAPT type treatments including CBT and GET.

The stop GET campaign are doing well in collecting and publishing some people's stories specifically about their bad experiences of GET and its consequences, and I hope these would be included.

But this needs a wider scope, including examples of people treated badly by medical staff, refused tests or treatments for coexisting conditions, etc.

We need to get the whole IAPT and MUS, PPS etc. juggernaut sent over a cliff.

I think @sb4 makes some valid points. I don't think the focus on the web site should be on arguments about patriarchy, sexism etc, though some campaigners who use the site may choose to focus their particular campaigns on this aspect.

These are my thoughts too. I don't think the sexism should be the main focus as it is importance is waning, although still of relevance.

Edit:
The website could also have sections for each condition that has been called MUPS - ME, EDS, POTS, FM, IBS etc and links to the latest biomedical research and to published articles about research. This means any journalist has the whole 'package' available in one place. ~And contact details of experts willing to be interviewed.

Our version of the SMC!

Agreed!

This needs a new thread. @Molly98 would you like to do the honours???

I don't have more time today as I am about to get ready to share a birthday lunch with a certain ME medical advisor.

 

[Wolfiness]

@Wolfiness
" 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."

I highly doubt this. I know I personally have more inate sympathy if I where to see a girl ill than a guy, it's not right but thats just my gut feeling and I think others are like me.

But do you believe them more? 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.

Let me ask you this

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 know, because patriarchy is the pervasive consequences of men in power, and the world and science has already been shaped by millennia of patriarchy. If racism was eliminated tomorrow there would still be millions of poor African Americans being treated like crap for socioeconomic reasons the root cause of which was racism.

I do think that if sexism/patriarchy had been eliminated in 1950 we would probably have a biomarker by now. Nobody is saying that finding a biomarker isn't Job #1!

 

[user9876]

I have chatted to @Countrygirl before about the need to set up a website - twitter/facebook called ME Watch where ME sufferers can publically record any time they have been wrongfully treated, dismissed, ignored, neglected by medical staff.

I think if you want to reach a wider audience then have MUS watch and get other patients to record when they were mistreated on the basis that they had MUS. I suspect there are quite a lot of cancer patients whose diagnosis was delayed.

Maybe you are suggesting something more specific but I think the attitude to ME (and MUS) has a wide effect beyond just ME patients and kills some people.

 

[Ysabelle-S]

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. I've heard heart-wrenching accounts by men with ME saying they were made to feel they were not proper men or that their masculinity took a hit because of the illness and the way others wrongly perceived them. I hope this has not happened to any of the male ME sufferers here.

Other men have historically been targeted in this way - gay men being the best example, but also men who have interests usually seen as 'feminine'. Misogyny is something men or women indulge in, towards women and girls mostly, but also towards men and boys.

In the case of MUS, this is politically and financially driven misogyny, and it's backed up by ableism and class prejudice. I really do think class prejudice has a part of play in this (at least in the way this MUS mentality is so strong in England). Most medical and psych professionals are probably middle class. Of course many of the sufferers may also come from a middle class background, but once you're unable to work, your financial status will take a hit, and you may well end up poor. Attitudes to the poor are similar to racism - the poor are lazy and weak, and lack self-discipline (not true, but it's the perception), and funnily enough, that's how the ill are seen too.

I think female professionals collude with MUS for professional gain, and possibly because they have been encouraged to enter this field. I wonder how much the males who originally hijacked this illness have encouraged these women because it was so obviously a male-dominated bunch to start with and MUS is so obviously based on historic gender prejudices.

Personally, I think sisterhood only exists in pockets - middle class women looking out for other women in their own profession (networking), rather than looking out for the patients (and this could in part be because of their own prejudices towards ill or poorer people). They will also prioritise their own families and children, and that means earnings matter more than looking out for women's rights.

It's like women who call themselves feminists, climb high in their careers, but their success is partly built on the lower paid labour of their female childminders. A lot of so-called feminists in mainstream politics don't seem to care about the ill, disabled, or women lower down the economic scale. The voting records of some of the female politicians in the House of Commons are shocking, and that includes some of the doctors-turned-politicians.

 

[Wolfiness]

I dont want to come off as a dick but thats not how most people use the word patriachy and its not how the dictionairy uses it either "a system of society or government in which the father or eldest male is head of the family and descent is reckoned through the male line."

I don't necessarily disagree with what you said about masculinty been seen as good etc but I think you need a new word to decribe this.

You missed out "a system of society or government in which men hold the power and women are largely excluded from it."
Quoting dictionary definitions of hugely complex socio-historical issues like sexism or racism doesn't get us very far, and nor does assuming the validity of "how most people" view something. How do "most people" view ME?

 

[trishrhymes]

New thread started here:
http://forums.phoenixrising.me/inde...tients-stories-and-factual-information.51601/
Aim: to discuss setting up a MUS web based 'media centre' - a one stop shop for patients stories of being treated as MUS. And factual information about all the conditions wrongly described as medically unexplained.

 

[slysaint]

Yesterday I shared this tragic tale on twitter http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/

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.

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.

 

[sb4]

You missed out "a system of society or government in which men hold the power and women are largely excluded from it."
Quoting dictionary definitions of hugely complex socio-historical issues like sexism or racism doesn't get us very far, and nor does assuming the validity of "how most people" view something. How do "most people" view ME?

"
patriarchy
ˈpeɪtrɪɑːki/
noun

1. a system of society or government in which the father or eldest male is head of the family and descent is reckoned through the male line.
   "the thematic relationships of the ballad are worked out according to the conventional archetypes of the patriarchy"
   • a system of society or government in which men hold the power and women are largely excluded from it.
     "the dominant ideology of patriarchy"
   • a society or community organized on patriarchal lines.
     plural noun: patriarchies
     "we live in a patriarchy"

That is the full definition however it is different from a definition early in the thread. If you say the patriarchy and you are meaning gender roles/ masculinity then this will lead to confusion. ie Gender roles are a reason we are treated shit VS "a system of society or government in which men hold the power and women are largely excluded from it." are the reason we are treated shit.

I'm not trying to dismiss the argument because of a dictionairy definition, I'm simply saying it causes the blame to be put at the wrong place...

"or does assuming the validity of "how most people" view something. How do "most people" view ME?"

Well the dictionairy is made by common usage of words, so how most people use a word is important, making that comparason to how people view ME is apples and oranges.

I understand your argument for why I feel more sympathy for women however I don't understand how 5 girl patients are worth 1 guy. Maybe you were being a little tongue in cheek?

I am willing to think that a bearded guy vs teenage girl is more likely to be taken seriously however I just don't think the difference is that much. Plenty of bearded guys on here are treated as shit as teenage girls are.

 

[Cinders66]

I think the ME community already in the IOM definition and report has a great weapon against this MUS March but it's not being used by the charities. If ME is diluted by psychiatrists deliberately into CFS defined as fatigue plus the odd symptom and PEM ereased from the narrative as the unusual disabling feature then it's quite easy for the MUS lot to categorise that as unexplained fatigue of unknown cause, there's no treatment so let's be really positive about how we can improve things by looking at things Available e.g. The psychological, social and behavioural.
If we had ME or ME /CFS recognised as the IOM report said something about chronic, serious, systemic disease typified by an abnormal response to exertion then this whole psychological, behavioural framework could more easily be pushed to a secondary support thing and it respected enough for MS researchers or whatever to cross over into our fiekd.
I can't see how it's not recognised that accepting the UK CFS umbrella which has been so vague and become so tarnished since its inception has had the effect of failing to get ME properly respected. But this has already gone on so many years now. I think I will leave it to the less battle weary to try to think of a better way forward. MERUK pulling out of CMRC (although being quite stuffy with patients all through the years on this ) is great but what's the new vision for progress? Emma shorter seems to be full of fighting spirit still and I hope the setting up of an ME action in Scotland as a new movement can start to send a few shockwaves through the system.