Giving M.E. A Place In The World: A HuffPost blog by Sonya Chowdhury

[Cinders66]

I feel AFME runs more like a self serving business but I left years ago,so dont know what the actual member support is like.

Action for ME ran a 1% campaign in the early to mid 2000s calling for £35 million to be spent per year on research, 1% of the cost of ME to the country. They had 200 people at a protest on a bridge. This was their 2nd attempt: they didn't get enough people they felt for their 1st protest. There was also postcards that you were to send to your MP and others and I think a media campaign .

It was all pie in the sky. Outside the US, lobbying generally has little effect on what illnesses get in the research budget as far as I can see. The MRC is kept separate and independent from politicians.

I can't really comment as to how earnest they were or how much more successful the lobbying could have been if done by a different group as although I was a member then I wasn't well enough to read their literature and had no idea about this.

I think it's a shame they've gone 180 degrees and now have no interest in lobbying or ability to run hard hitting campaigns. I know we have different ideas about what the state could and should do. But on a public fundraising level, the way that illnesses also raise money, AFME/AYME are doing us no favours by not caring about what criteria are used or supporting irresponsible FITNET promotion etc. Their failure to ensure good methodology on the PACE trial was also diasastrous.

 

[Manganus]

A lot of emphasis goes on fundraising.
They have their 'fundraiser of the week' , a fundraising team, a fundraising pack and free fundraising resources and AfME merchandise available on a sale or return basis.
They also have an Income Generation team who help secure fund from corporate and foundation sources eg:
Organisations such as The Big Lottery Fund; The Lloyds Bank Foundation; The Henry Smith Charity; The Rayne Foundation; The Garfield Weston Foundation; The Masonic Charitable Foundation; The John Jarrold Trust.

I imagine this is fairly standard for a lot of charities(?)

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

 

[Valentijn]

Where's the nonplussed emoji?

But I'm starting to think there may have been a serious falling out between Crawley and AfME.

From September to April, he seems to get every bug going, probably thanks to his depleted immune system, and a recent stomach bug lasted four times as long as normal. Luckily, we are seeing less and less post-exertional malaise ....

Right ... he's not having PEM, he's just catching bugs all the time, with the same symptoms as PEM It sounds like Chowdhury has bought into the illness-denial CBT to some extent, and is attributing illness exacerbations to external factors like a good little brainwashing victim. It's also telling that those bad times of year largely coincide with the school year.

 

[boolybooly]

A while ago A4ME joined with Westcare counselling services, which was a CBT counselling service. I noticed this because I was living in Bristol at the time and had some counselling from Westcare as well as some contact with A4ME.

Westcare counsellors helped me to understand that I couldn't fight the illness and had to rest and pace which was realistic advice and a constructive use of CBT.

My subjective impression of A4ME on the other hand was that it felt a little cliquey and I felt like an outsider, as though I was being "handled" by an in group rather than making an alliance with an organisation run by PWME for PWME which is the kind of feeling I get from MEA.

I have some experience of working in a charity and I know the internal politics can get surprisingly hairy. So I concluded A4ME had corporate culture type issues and was probably being run by a mix of people some of whom had a slightly cult like dynamic going on due to the origin of the organisation as a project of Clare Francis, who used her fame to get it started.

So I noticed the merger and the subsequent decline of patient centered services from the new A4ME entity. I tried some of the A4ME counselling and found it to be of a different quality, without real purpose, just talking therapy for the sake of it as opposed to an educational process focussed on ME. Later even this service was closed down. I still dont understand why A4ME merged with a counselling organisation and then stopped counselling but I felt the net result was to remove the good advice Westcare had offered from the CBT process and shut it down.

I think what may have happened is that people complained that CBT in general was not the answer to ME but in the process the baby got thrown out with the bath water. What they could have done is reclaim the night and develope good CBT to supplant bad CBT. Because CBT cannot cure ME but it can help you adjust to life with ME which is a very different proposition. So I would say that was a slightly headless chicken type move from A4ME but they decided to treat CBT as toxic. They do now apparently have a mentoring program of some kind but I have no experience with that.

I noticed A4ME trying to take a place at the table with NICE and MRC processes which the BPS lobby are trying to capture and monopolise, so they have been vying for a place as a stake holder. Which in principle is great and initially more funding was made available but most of it went to PACE which is entirely counterproductive BPS fakery and A4ME have not been able to counter the BPS proponents by engagement because the BPS lobby are well entrenched at NICE and the MRC.

A4ME is currently touting Peter Whites study on the neurophysiology of pain as one of its research projects funded by CMRC.
https://www.actionforme.org.uk/reso...he-neurophysiology-of-pain-in-me-study-about/

This is a very wrong move IMHO and is not going to end well. White was a PACE author and it is likely he will try to use this neurological angle on nociception in a similar way to BPS to try to suggest a discontinuity between the sensation of pain and its cause, i.e. that the illness is not what it feels like as a prelude to saying people can be forced to do what makes them feel iller and all they need is a couple of neurofen, which is the antithesis of proper pacing advice and ignores the immunological basis of ME but is very much in line with the aims of BPS which are to show in a court room that PWME dont need support money spent on them because they are delusional and their problems can be wished away.

We need to lobby. We need to educate the health secretary and prospective future health secretaries about the fact there are two teams and that one of them, the BPS team, is blagging. One of the best ways to do that is to blow PACE out of the water and embarass everybody who had a hand in it and I think that this is a situation where advertising our grievance by protesting the controversy is helpful. This is why I am very grateful for Dr David Tuller's writing.

I think time will show A4ME's collaboration with White as a disastrous misstep.

A way to lobby which will capture the interest of the media is to demonstrate a narrative by having a very public showdown over PACE and then shortly after that a "further development" where all the patient lead organisations protest by suspending their involvement in the CMRC on the grounds they cannot work with BPS proponents responsible for the unethical PACE results.

 

[Invisible Woman]

Call me an old cynic - it's happened before but:

I reckon these types of article are a lure. Get new patients or those who are politically unaware to join up or use you as the primary source of info and then you can control the information they have access to and have a huge impact on their reaction to certain research projects run by certain researchers....

 

[Snowdrop]

as though I was being "handled" by an in group

Like Livestock. This is one of the true horror's of the BPS mentality. Their superiority over us mere sick people. It's an attitude that one always thinks can't exist in (whatever) modern times one lives in. Surely all people are worthy of consideration and basic human respect afforded freedom of choice etc. Not in this context -- and we are the one's sadly swept up in their hateful attitude. They would prefer we were not free agents and their belief is that we are incapable of making right choices or understanding our own experience.

So I concluded A4ME had corporate culture type issues

Yes, this part has nothing to do with ME or the 'mission' of the charity. It is just standard corporate selfishness. The entity's (in this case AfME) primary purpose is to ensure it's continued existence as the most financially viable that it can be. All person's within the culture adopt this mindset without thinking about it and their beliefs stem from that and they defend it vigourously in a closing of ranks and shutting down any counter thought.

 

[RogerBlack]

I think what may have happened is that people complained that CBT in general was not the answer to ME but in the process the baby got thrown out with the bath water. What they could have done is reclaim the night and develope good CBT to supplant bad CBT. Because CBT cannot cure ME but it can help you adjust to life with ME which is a very different proposition.

A problem is - where is the data to support this claim.

If you want to start a study and get funding for CBT as illness treatment, not curative (as PACE-esque is), part of the case for this would normally be either a strong theoretical background, or a case series.

If NICE guidelines are for PACE-esque CBT, then there will be no possible case series from this source. (in the UK).
And to have a convincing case series, you would need to have objective measurements of illness in the months and years afterwards, and 'no' CBT clinic ever follows up this way, even if you have one that is trying 'classical' CBT.

Plus, there is a complete lack of research into the basic illness course, never mind post treatments.

You'd ideally like to start from research that's followed (say) 50 patients from disease onset for at the bare minimum 5 years, with weekly diaries of how they're feeling, in order to correlate worsenings with PEM.

And it's not been done.
Even the very basic step of following people for a month or so with daily diaries hasn't.
(to find out PEM trajectory).

 

[boolybooly]

And it's not been done.
Even the very basic step of following people for a month or so with daily diaries hasn't.
(to find out PEM trajectory).

Good point.