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STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

Messages
15,786
Isn’t that just an ‘oh poor us’ excuse.
. . . choose which side you identify with most and you’ve got your justification for whatever insanely murderous action you want.
The picture of ME as a single disease is no longer tenable, solving it for everyone who has a tentative diagnosis of ME/CFS under whatever criteria, will require interest from a broad range of specialisms, which is potentially what initiatives like the CMRC are able to deliver.
You seem to have a rather dim view of ME patients and ME as a distinct diagnosis. Have you considered a career in a different field?

A "fatigue" charity, or a "fatigue" research council, or "fatigue" research is quite useless for ME patients, and has been proven to be very harmful over the past decades. We have several specific and debilitating symptoms - we are not part of the fatigue spectrum, and for those of us who do have fatigue, it's generally a rather minor concern. We need our own research into the symptoms and disease(s) which have put an end to our ability to live a real life.

Demanding research focused on our disease does not make us warmongering whiny bitches. We want progress in the research, and it's the only rational way to achieve it. Continuously throwing in a few dozen ME patients with 600 chronic fatigue patients and calling it "ME/CFS research" gets us nowhere.
 

Cheshire

Senior Member
Messages
1,129
Isn’t that just an ‘oh poor us’ excuse.
Ok, so saying the situation of ME patients is very often not taken as seriously as that of other diseases is whining...

To the world at large we are and will remain, just another patient group, we can argue that certain medical specialisms have undermined the level of public sympathy we might otherwise have enjoyed, but is anyone going to listen – probably not.

I doubt most of us are looking for enjoyable sympathy, we are looking for a decent care, which is only our right we have often been denied of.
 
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10,157
@N.A.Wright
People should be able to support who they want to for their own reasons. Why not respect these differences, rather than attack them? Why not respect these differences rather than provoke members with statements that compare differences between patient groups to the Gaza strip (which is insulting to those patients who happen to live in that area and just patently ridiculous because there is no comparison).

This thread is about why a charity chose to not to support the CMRC, that is their prerogative -- those that wish to support them can do so in their own right without being lectured at and accused of all sorts -- don't you think?
 
Messages
5,238
Location
Sofa, UK
On the substantive issue being discussed in this very difficult but interesting thread, I suppose nowadays I tend to lean towards those who try to work with, and even within, flawed and corrupt systems, to try to change them for the better, because evolutionary change seems to me much more common these days than revolutionary change and it can be a driver of revolutionary change as well. Whereas opting out and complaining is an awful lot easier and more satisfying, but all too often it seems to achieve nothing - what really matters is not ideological purity but what is effective in achieving change.

But as far as lecturing and insulting and being disrespectful of opposing views is concerned, it makes absolutely no sense whatsoever to me to fight fire with fire. That fatally undermines the whole argument. If you complain about somebody for throwing accusations around and insulting people and you do so in a way that does exactly the same thing to those you're berating, don't kid yourself that you occupy the moral high ground - that in itself is building walls rather than bridges. Trying to make points about other people's aggressive behaviour without ending up imitating them requires a lot of self-discipline - if you can't do that, don't even try because you'll inevitably only make things worse.

Ultimately how I see any debate like this is that there is always a spectrum of opinion amongst those who oppose anything, and that situation is created by any strong and polarising viewpoint. In this case, the application of reactionary concepts like 'psychosomatism' and 'functional disorders' to a chronically ill population has a tendency to polarise that population in a range of different opinions in opposition to it. (The right physics analogy is eluding me right now, but if someone can describe this in terms of electromagnetic forces, preferably using the term 'repulsive' for the original cause of the polarised spread of opinion, that would be much appreciated).

In resistance to any objectionable force, there will always be those who try to collaborate and influence and move things gradually in the right direction, those who oppose and object vociferously and try to stand apart from the 'tainted' forces in what they do, but thereby have relatively little influence on the corridors of power - and a spectrum of stances in between. Everything works like that in politics, and I suspect that any movement for change needs both approaches. My main concern is that all those who are opposed to the problems that create the polarisation, wherever they sit on the spectrum, should always be trying to work together rather than against each other, and building bridges between each other rather than walls - and that's always a two-way street, both sides are always responsible for this - because the more divided we are, the less effective we are. Everybody, on all sides of this argument, is responsible for their own behaviour and should always try to keep their mind set on what we are trying to achieve. We have a much better chance of achieving it together than we do fighting amongst ourselves - and the least we can do is to try hard to be respectful of those who take a different approach to the problem.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I couldn't agree more with this excellent analysis, @Mark. I can understand the wish to stand completely apart from the BPS school and criticise from the sidelines: but I wish that those who take that stance could equally understand and even appreciate the strategy of working from within the system to oppose the BPS school via a different route.

We all want the same thing: the downfall of the BPS model as applied to our devastating organic disease, and a huge increase in funding for biomedical research. We should be supporting each other.
 

Min

Guest
Messages
1,387
Location
UK
Working with White and Crawley – you can’t make peace with your friends. Patients have to work with all parts of the medical research community, the alternative of selective co-operation, consigns ME/CFS patient supported studies to an isolated ghetto where significance is lost.

The chair of the Collaborative is alleged in another thread to be labelling children with myalgic encephalomyelitis whose symptoms remain unchanged as recovered from the neurological illness , but instead having a psychiatric disorder. We know she is 'researching' the highly controversial Lightning Process on vulnerable sick children.

Another member of the Collaborative ran the PACE trial, the results of which are being spun to make it look as if exercise is a suitable treatment for myalgic encephalomyelitis, when it is highly dangerous to many.

These are not doctors interested in biomedical research, they are doctors with a set agenda to ensure we are only ever offered nonsense instead of adequate testing and treatment.


Enemies indeed to every M.E. patient in the UK . I shudder to think how they will influence the outcome of anything the Collaborative undertakes.
 
Messages
5,238
Location
Sofa, UK
The chair of the Collaborative is alleged in another thread to be labelling children with myalgic encephalomyelitis whose symptoms remain unchanged as recovered from the neurological illness , but instead having a psychiatric disorder. We know she is 'researching' the highly controversial Lightning Process on vulnerable sick children.
Esther Crawley is the Deputy Chair, not the Chair. Stephen Holgate is the Chair.
http://www.actionforme.org.uk/get-i...e/members-of-the-cfsme-research-collaborative
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
These are not doctors interested in biomedical research, they are doctors with a set agenda to ensure we are only ever offered nonsense instead of adequate testing and treatment.

I don't think anyone here is denying that there are members of the BPS school within the collaborative or that the BPS agenda that is harmful for us. That's not at issue.

I shudder to think how they will influence the outcome of anything the Collaborative undertakes.

I think the existence of the collaborative might help diminish their influence within ME science in the UK. Acting on their own, the BPS school have been extremely successful in dominating the government and media view of ME in the UK: now that they're in a collaborative with biomedical researchers, there's a counter-force acting on them. I think the BPS researchers ought to be shuddering about how the biomedical scientists will be influencing the outcome of anything the collaborative undertakes, rather than the other way around.

I think it's going to be increasingly difficult to be one of the BPS school and sit through a "broad church" ME conference including the latest biomedical research and not feel like a total fool.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
So far the BPS school have not listened to patients, and have been able to dismiss what people with ME say as reinforcing their view. I hope that ongoing exposure to the findings of the biomedical folk will challenge their view in a way we cannot.

I doubt we will see complete retractions, but with luck some gradual movement away from the psychosomatic view.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
From afar. I remember years ago reading about the setup of the Collaborative, Stephen Holgate's involvement. I was very, very pleased. We *will* get there, slowly but surely I believe. I personally feel okay about it. I know you guys in the UK have had it a lot harder than a lot of us from other countries though. But I think it is part of a turning point for us.
 
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rosie26

Senior Member
Messages
2,446
Location
NZ
I think I understand where the 25% ME Group are coming from too. They are dealing with severe ME patients every day. They see how terribly ill they are. It's only natural they are strongly protective of them and have an urgent response of calling for better controls in research - that's my take on it. Please correct me if I am not understanding it properly.
 
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Min

Guest
Messages
1,387
Location
UK
I think I understand where the 25% ME Group are coming from too. They are dealing with severe ME patients every day. They see how terribly ill they are. It's only natural I guess they are strongly protective of them and have an urgent response of calling for better controls in research - that's my take on it. Please correct me if I am not understanding it properly.

Yes, the severely affected in the UK are basically left with no medical treatment or support for decades, often being ridiculed when they ask for help. The unlucky ones are inappropriately sectioned under the mental health act. No other neurological illness is treated in such a horrible way.
 
Messages
68
Location
Wales uk
As a very severely effected patient in the uk I think it's disgusting how the 25% group have left us hanging out to dry by not participating in the collaborative.

I am also shocked by the way they have recently treated some very severely sick members of there forum.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I think I understand where the 25% ME Group are coming from too. They are dealing with severe ME patients every day. They see how terribly ill they are. It's only natural they are strongly protective of them and have an urgent response of calling for better controls in research - that's my take on it. Please correct me if I am not understanding it properly.

Hi Rosie - a lot of us on here (me included) would probably be in the worst-affected 25%, but I don't think that it's the severity of illness that drives people to reject (or accept) the idea of the collaborative. I think it's to do with temperament, world-view, life experience, the views of people in your immediate social circle, familiarity (or not) with how science, organisations and politics work, and so on.

Any PWME, whether severely affected or not, desperately wants to get well and desperately wants good, biomedical science and treatment that's free from the interference of the BPS model. All of us want that - I think we just have different views on whether the collaborative is going to help achieve it. Personally, I'm optimistic.

I think that optimistic view is much more prevalent than people might think. Some PWME can get very angry at anything to do with the BPS school and can aggressively attack other patients over the issue (I'm not referring to anyone on this thread!) and so people who favour a more pragmatic approach - as with this collaborative - keep silent because they don't want the aggro. However, I suspect that (cautious) supporters of the collaborative are in the majority.
 

Min

Guest
Messages
1,387
Location
UK
As a very severely effected patient in the uk I think it's disgusting how the 25% group have left us hanging out to dry by not participating in the collaborative.

I am also shocked by the way they have recently treated some very severely sick members of there forum.


The 25% Group have never supported the MEA and AfME's policies, it is nothing new. I have been a member since they started.

The aggressive members of their facebook group who have been abusing those who supported the group's own statement have been banned by Simon Lawrence. I do hope they will not bring their argument here.
 
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Messages
68
Location
Wales uk
Who ever decided to post this thread bought the debate onto this forum.

The fact the 25% group is now banning members who don't agree with the statement is indicative of how intollerant it has become to people's differing views. And it isn't one or two people who have spoken up it is a lot of people many who don't normally speak up.

I never realised that length of membership of the 25% group meant you had more say. That's hardly a democratic process.
 
Messages
1,446
.
PR members are free to post relevent material on Phoenix. As the Collaborative and its repercussions are relevent to all ME sufferers and carers, its fair to be able to post about it, and discuss it, on an open forum as this is.

@ithought - are you saying that the 25% Group (charity membership) are banning members? Or the FB forum?
 

Min

Guest
Messages
1,387
Location
UK
Who ever decided to post tgroup has never supported the MRA or AfMEhis thread bought the debate onto this forum.

The fact the 25% group is now banning members who don't agree with the statement is indicative of how intollerant it has become to people's differing views. And it isn't one or two people who have spoken up it is a lot of people many who don't normally speak up.

I never realised that length of membership of the 25% group meant you had more say. That's hardly a democratic process.

My point was merely that, as a long term member, I am aware that the 25% group has never supported the MEA and AfME. There is no need to be rude.

A small well organised group of people who disagree with the 25% Group's statement are causing enormous trouble on the 25% Group's facebook page, and two have been banned for bullying and being abusive. It looks as if ithought wants to bring the squabble here and is blaming me for daring to post the statement here.