Why are not more ME and CFS patients involved in advocacy?

[Tito]

Very good point. And an ugly and very 'visual' death with people becoming emaciated, disfigured with Kaposy and skinny. Far away from someone dying from a stroke or heart attack.

 

[Tito]

I am wondering: is there somewhere an illness actively researched but without any patients' advocacy?
If patients don't fight, will there be anybody else who will?

 

[Roy S]

I am wondering: is there somewhere an illness actively researched but without any patients' advocacy?
If patients don't fight, will there be anybody else who will?

I think a good comparison could be made to Alzheimer's patients. They can't advocate, but their families do quite effectively.

 

[Tito]

Right. Do you know what they do to obtain support that we could do too? Is there something in their approach that we could copy?

 

[Dx Revision Watch]

When it comes to say MS there is one main UK charity - with ME we have, what, six, seven? Why?

An MS Society that has used its funds to fund a CBT study by Chalder and Moss Morris?

A children and young person's charity (AYME) that is supportive of the SMILE Trial and has Dr Esther Crawley as its medical advisor.

Action for M.E., who kept the lid on the aims and objectives of Dr Richard Sykes' CISSD Project and the make-up of its workgroup, that was chaired by Michael Sharpe and Kurt Kroenke, about which virtually nothing was known until I and others started investigating and who twice changed its name on its logo to "Action for ME and Chronic fatigue" until it was forced by the Charity Commission and patient and advocate pressure to revert to its registered name and Charity Objectives and who until relatively recently, excluded its membership from attending AGMs and participating in a democratic trustee election process.

I could go on...

...the point being, that the policies and positions of a single patient organization may not reflect the views of its membership.

What are the six or seven main UK charities that you are thinking of Firestormm?

We have

Action for M.E.
ME Association
AYME (specifically for children and young people)
TYMES Trust (specifically for children and young people)
Invest in ME (run by a non elected committee, not a membership organization that is consulted on policy and position)
ME Research UK (a research organization, not a membership organization)

 

[Firestormm]

An MS Society that has used its funds to fund a CBT study by Chalder and Moss Morris?

A children and young person's charity (AYME) that is supportive of the SMILE Trial and has Dr Esther Crawley as its medical advisor.

Action for M.E., who kept the lid on the aims and objectives of Dr Richard Sykes' CISSD Project and the make-up of its workgroup, that was chaired by Michael Sharpe and Kurt Kroenke, about which virtually nothing was known until I and others started investigating and who twice changed its name on its logo to "Action for ME and Chronic fatigue" until it was forced by the Charity Commission and patient and advocate pressure to revert to its registered name and Charity Objectives and who until relatively recently, excluded its membership from attending AGMs and participating in a democratic trustee election process.

I could go on...

...the point being, that the policies and positions of a single patient organization may not reflect the views of its membership.

What are the six or seven main UK charities that you are thinking of Firestormm?

We have

Action for M.E.
ME Association
AYME (specifically for children and young people)
TYMES Trust (specifically for children and young people)
Invest in ME (run by a non elected committee, not a membership organization that is consulted on policy and position)
ME Research UK (a research organization, not a membership organization)

Sounds about right. There's probably more. I do wonder if there was an identified cause and specific objective test for example, we'd really need them all. Or even if we need them all now. Seems to be to be dividing up effort and resources. Kind of counter-productive in many ways. There was probably an historic reason for the existence of the MEA and AFME. Some disagreement or other? Not seeing eye to eye. I wonder also if there's been a split in the past because of the nomenclature?

 

[Mark]

Firestormm, when you say "there's probably more", well I think there probably aren't. Suzy has listed the 6 that I'm aware of. There are of course other organisations and local groups which aren't charities, which may confuse the picture, but I think there are only these 6 UK charities. Unless anyone can name another that's missing from that list, which would be interesting.

As I understand it...

The ME Association is the oldest ME charity and, in that sense, the original.

ME Action, as I understand it, is not a registered charity but it split off from the MEA when they changed name from "encephalomyelitis" to "encephalopathy" - that's the disagreement over nomenclature.

TYMES Trust: for children and young people specifically is a legitimate reason to have a separate charity IMO.

Invest in ME and ME Research UK are both primarily concerned with research and again I think that's a legitimate reason for a separate charity with a different and dedicated focus. Invest in ME in particular has quite limited and specific objectives and it's a success story from that point of view because it is extremely effective at fulfilling that objective with minimal costs and overheads. These two have slightly different focus in terms of the work they do, but it does seem conceivable they might be usefully combined into one organisation.

I do agree that there might well be some value and mileage in combining these 4 charities into one, stronger organisation. There might be some organisational inefficiency in doing so too, but I think there are plenty of people who wonder why there aren't fewer, stronger voices. I don't know enough about it but I do wonder whether it would be feasible for Invest in ME, ME Research UK, the MEA and perhaps also the TYMES Trust to work more closely together, combine, or federate in some sense - perhaps something like a Coalition or some other kind of forum where the various organisations can discuss working together, perhaps even feasibly one could imagine they could be combined into one charity with research and young people's 'divisions'. I don't really see major ideological or political differences between these 4, although perhaps there may be some personality clashes. If there is a clash, then my guess would be that the other 3 organisations aren't entirely happy with the focus and leadership of the MEA. Personally, I would rather like to see those 4 organisations combine into a bigger and stronger organisation - I do think there might be some benefit in that.

But with the above, there are 4 charities, one for young people specifically, two for research, and that wouldn't really be complete overkill on its own in terms of having too many charities.

Where the situation then becomes complicated, in my opinion, is when Action for ME and AYME come in. I don't know about the history of when, why, or by whom Action for ME was formed, and who decided that a separate national charity to the MEA was required. That history would be highly relevant to the question Firestormm raised, because really, in terms of major national charities with a generic focus, there are only the two: Action for ME (and its 'youth wing', AYME), and the MEA.

My perception is that it would be extremely difficult and almost impossible to reconcile AfME and AYME with the other organisations: their image is tainted in the rest of the community by their perceived associations with the psychiatric lobby and government interests. It would take an awfully big change for the rest of the ME advocacy community to trust those organisations enough to work with them, from what I can see. AfME can't be ignored, though: they have a very large budget, I haven't compared it with the MEA's but they are substantial in size.

The way I would see it: If one wanted to see a closer union between the various ME charities, the most realistic might be to imagine the first four charities amalgamating in some way - or being in some sense 'absorbed' as divisions of the MEA, which would require the MEA to change in the process - with the aim of creating a larger organisation capable of challenging the perspective of AfME. I agree that the scene can appear confusing but when you break it down, there really isn't such a large number of charities after all. By comparison, there are several cancer charities, with different focuses on research, child support, adult care...

Anyway, that's my rough overview of the scene, and I'm sure there is much that some people will want to challenge in what I've written above, and much that I haven't fully understood, so I look forward to reading some more views on this...

 

[taniaaust1]

I am wondering: is there somewhere an illness actively researched but without any patients' advocacy?
If patients don't fight, will there be anybody else who will?

You probably need to have something like Ebola to have an illness being researched without patients advocacy... or drug companies thinking they could make a lot of money from the research.

 

[Whit]

I think a diagnostic test would change everything for CFS including patient advocacy. Creating a clear illness to fight for. As it is I think there are too many unknowns, too many battles to fight. It probably feels way too daunting for patients who are so sick and have endured so much prejudice.

I think a diagnostic test would provide just enough recognition for patients to emerge from darkness and fight.

Hopefully it's coming soon.

 

[alex3619]

Given current debates, I am bumping this thread.

 

[Min]

Those that do become involved in advocacy in the UK find themselves victims of the Wessley/White/Crawley etc smear campaign labelling them harassers of researchers (for daring to make FOI requests) snd even dangerous terrorists making death threats (no evidence of this has ever been produced, it is hearsay).

The TYMES trust document on the setting up of the Collaborative is one example of how misrepresenting us as harassing researchers is deliberately being used to put off any new biomedical researchers, so that the lucrative White/Crawley etc psychobabble gravy train can continue rolling.

 

[alex3619]

Those that do become involved in advocacy in the UK find themselves victims of the Wessley/White/Crawley etc smear campaign labelling them harassers of researchers (for daring to make FOI requests) snd even dangerous terrorists making death threats (no evidence of this has ever been produced, it is hearsay).

The TYMES trust document on the setting up of the Collaborative is one example of how misrepresenting us as harassing researchers is deliberately being used to put off any new biomedical researchers, so that the lucrative White/Crawley etc psychobabble gravy train can continue rolling.

Yes, disempowered and demoralized is how I put that, by the attitude and actions of those enforcing the status quo. As I have put it elsewhere, we cannot blame most medical professions for this situation (and this extends to scientists as well) but the medical profession, and allied scientists, are responsible. To fix things they need to stop ignoring problems and act.

 

[*GG*]

Those that do become involved in advocacy in the UK find themselves victims of the Wessley/White/Crawley etc smear campaign labelling them harassers of researchers (for daring to make FOI requests) snd even dangerous terrorists making death threats (no evidence of this has ever been produced, it is hearsay).

The TYMES trust document on the setting up of the Collaborative is one example of how misrepresenting us as harassing researchers is deliberately being used to put off any new biomedical researchers, so that the lucrative White/Crawley etc psychobabble gravy train can continue rolling.

Is this that serious a problem? Where is the media to shine some rays of light on this? I guess you are not in a "free" country (no one is probably truly free), but also thinking who cares what some people think and say of you, especially if you are helping your cause? Seems to me that more emphasis needs to be put on how if we got healthier and/or cured enough, that we could start giving back to society and not being a drag on it!

My impression is that in the US that people get behind group(s) that are not really going to help us, get disillusioned (the XMRV seemed like a potential big wake up call for the populace at large, but appears to be a dead end) and/or frustrated, and therefore it is a wasted effort of our precious time and energy! (CFSAC and former CAA come to mind).

Feel like I am missing more to say, perhaps it will come to me later?

GG

 

[*GG*]

Yes, disempowered and demoralized is how I put that, by the attitude and actions of those enforcing the status quo. As I have put it elsewhere, we cannot blame most medical professions for this situation (and this extends to scientists as well) but the medical profession, and allied scientists, are responsible. To fix things they need to stop ignoring problems and act.

Perhaps many of them do not know of the situation and need some good advocacy in regards on why they should help! Millions of sufferers and the Billions it cost economies in various countries!!

GG

 

[worldbackwards]

Where the situation then becomes complicated, in my opinion, is when Action for ME and AYME come in. I don't know about the history of when, why, or by whom Action for ME was formed, and who decided that a separate national charity to the MEA was required. That history would be highly relevant to the question Firestormm raised, because really, in terms of major national charities with a generic focus, there are only the two: Action for ME (and its 'youth wing', AYME), and the MEA.

Haven't really got anything to contribute to the current debate, though I imagine the difficulties of keeping the show on the road for PWME in general contributes as much as anything to not wanting to get caught up in anything else particularly stressful, particularly if you know you'll struggle to get help when things go wrong.

But…

I wanted to respond to this ancient post; as I recall, the founder of AfME, who now lives in Canada, once sent a letter to the MEA, praising them for their general stance against NICE, etc. In it, she stated that the reason she had set up AfME in the first place was that she had felt that the MEA were kowtowing to the government line too much and that AfME was supposed to act as a much needed corrective. Irony, eh?

 

[alex3619]

Perhaps many of them do not know of the situation and need some good advocacy in regards on why they should help! Millions of sufferers and the Billions it cost economies in various countries!!

GG

This is one of my big goals, but the other side of the coin is there too. Why should they act? Its someone else's problem. That needs to be addressed.

 

[Snowdrop]

Yes, maybe some our limited energy and resources could be spent finding good PWEE's (people with Extraordinary Energy) to get educated and volunteer to help us be seen.

 

[worldbackwards]

Yes, maybe some our limited energy and resources could be spent finding good PWEE's (people with Extraordinary Energy) to get educated and volunteer to help us be seen.

Perhaps Julia Haggis could help
http://www.kentonline.co.uk/sheerness/news/forty-mile-paddle-to-claim-place-22954/

 

[Snowdrop]

Perhaps Julia Haggis could help
http://www.kentonline.co.uk/sheerness/news/forty-mile-paddle-to-claim-place-22954/

Indeed. She'd still need to go through the education process though.

 

[Min]

Is this that serious a problem? Where is the media to shine some rays of light on this?

This is how we are misrepresented in the UK media, with no evidence ever produced for the outrageous claims made to demonise the very patients these doctors are paid to help.

http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis