United Kingdom: News from Forward-ME Group

[lunarainbows]

Is it this one you are thinking of? ME Association: Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS

If so, that was commissioned by Forward-ME and "The patient survey, analysis by Oxford Brookes University and final report were paid for by the ME Association and ME Research UK."

Yes that’s the one! So ME action didn’t have any involvement in that then. I’m not sure why I’ve been thinking all this time that they did. That was the one big thing I could think of, that I thought they had done in the U.K!

Well, I am then very grateful to the ME Association and ME research U.K. for funding it, and Oxford Brookes for doing the report. It was really good.

 

[Simbindi]

Agree that there are stick in the mud aspects of other charities but if an advocacy organisation indicates that it does not really care if some of the stuff it is associated with does harm I think that rapidly makes it impotent to tackle the establishment. It is open to ridicule. And of course ridicule has been the trump card for those who would dismiss PWME.

I agree that the USA MEAction appears to be doing this, which is why I said in the early post (where I gave Autistica as a positive example) that I think it would be wise for the UK branch to consider separating themselves from the original organisation, so we are left with a patient led advocacy organisation in the UK.

I agree that MEAction is making a lot of noise about change but have they actually done anything that is likely to bring about change?

I think there is a need to change the public narrative of M.E. and yes, this does have an immediate positive impact on people living with the condition.

 

[dave30th]

I agree that MEAction is making a lot of noise about change but have they actually done anything that is likely to bring about change?

I think this is kind of dismissive and unwarranted. Raising awareness and making noise is very much about creating change. Much of what ME Action has done has let many more people know about ME overall. That is critical in creating an environment that allows better research to be funded and so on. And many smart people at various ME action branches put out very smart information and updates on lots of relevant issues.

 

[Andy]

Yes that’s the one! So ME action didn’t have any involvement in that then. I’m not sure why I’ve been thinking all this time that they did. That was the one big thing I could think of, that I thought they had done in the U.K!

Well, I am then very grateful to the ME Association and ME research U.K. for funding it, and Oxford Brookes for doing the report. It was really good.

They did produce this article about it, you might have remembered it from that?
https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/

 

[lunarainbows]

I think that although with ME action, we can’t point to any specific big things like how ME association has Charles Shepherd sitting on the NICE guideline, or ME research U.K. which helps with funding, it is still important that we have a charity that is making noise and raising awareness in the way MEAction do. I don’t know how much it’s filtered down yet and certainly from my experience of health and social care and society in general, it doesn’t seem to have had a very big effect, but I’m sure that in time it will help, in addition to the other changes that are happening. They’ve recently started a long covid campaign too which is good.

We also urgently need more charities that do advocacy work to help with things like benefits, advocating in hospital / healthcare meetings on behalf of PwME, help and advocacy with social care / social workers, actual day to day, sometimes really terrible stuff that PwME are struggling with. As far as I’m aware there’s no such charity apart from 25% ME which has very limited resources, who is doing that.

 

[Esther12]

Yes that’s the one! So ME action didn’t have any involvement in that then. I’m not sure why I’ve been thinking all this time that they did. That was the one big thing I could think of, that I thought they had done in the U.K!

Well, I am then very grateful to the ME Association and ME research U.K. for funding it, and Oxford Brookes for doing the report. It was really good.

Just doing dinner, but wanted to mention that there was also this ME Action UK report you could have been thinking of, with various appendixs: https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf

 

[Andy]

I think that although with ME action, we can’t point to any specific big things like how ME association has Charles Shepherd sitting on the NICE guideline, or ME research U.K. which helps with funding, it is still important that we have a charity that is making noise and raising awareness in the way MEAction do. I don’t know how much it’s filtered down yet and certainly from my experience of health and social care and society in general, it doesn’t seem to have had a very big effect, but I’m sure that in time it will help, in addition to the other changes that are happening. They’ve recently started a long covid campaign too which is good.

We also urgently need more charities that do advocacy work to help with things like benefits, advocating in hospital / healthcare meetings on behalf of PwME, help and advocacy with social care / social workers, actual day to day, sometimes really terrible stuff that PwME are struggling with. As far as I’m aware there’s no such charity apart from 25% ME which has very limited resources, who is doing that.

Crisis, Advocacy and Support Service

In April 2020, we launched our new Crisis, Support and Advocacy Service for anyone living with or supporting someone with M.E. of any age, anywhere in the UK. We can:

• share information and support around all aspects of living with M.E., for adults, parents, children and young people, including welfare benefits, social care, symptom management, accessing health services, liaising with your child's school and getting reasonable adjustments at work
• offer understanding, empathy and emotional support, particularly during these challenging times
• source practical assistance local to you, such as your local mutual aid group, parish council and/or community hub; we can also source local producers/food outlets who are making home deliveries
• offer one-to-one advocacy by phone, email and video call; we will explain processes in an accessible way, and support you to challenge the opinions of others in situations that affect you, including supporting you to contact your GP to ask them to refer you for support for vulnerable people
• offer peer-mentoring support (in Scotland only), to share experiences and insights into living with or caring for someone with M.E.

https://www.actionforme.org.uk/get-...-for-you/crisis-support-and-advocacy-service/

 

[lunarainbows]

Just doing dinner, but wanted to mention that there was also this ME Action UK report you could have been thinking of, with various appendixs: https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf

Yes! I think that’s the one I must’ve been thinking of. Is this related to the same Oxford Brookes survey and report? So there were two reports produced?

 

[Kitty]

I don’t think ME Association has local groups or AFME for that matter.

I'm not sure if any are officially MEA groups, but my local ME group when I was involved some time ago seemed to indicate it was a local MEA group. Maybe I misunderstood.

I joined one when I was first diagnosed, which was branded as an MEA local group – I found it on the MEA website. It was just a local social support group, though, there were no activities beyond meeting up in members' homes or cafes for a chat with other folk who understood the challenges of living with ME.

 

[Andy]

Yes! I think that’s the one I must’ve been thinking of. Is this related to the same Oxford Brookes survey and report? So there were two reports produced?

There was the one report by Oxford Brookes and then, I assume, the individual members of Forward-ME wrote their own articles about it.

 

[Amw66]

I think this is kind of dismissive and unwarranted. Raising awareness and making noise is very much about creating change. Much of what ME Action has done has let many more people know about ME overall. That is critical in creating an environment that allows better research to be funded and so on. And many smart people at various ME action branches put out very smart information and updates on lots of relevant issues.

This.
Millions missing has raised awareness hugely and got some positive mainstream reporting- in multiple countries.
Research is desperately needed but equally so is changing the sociomedical narrative that frames perceptions and interactions and challenges the status quo.
Change cannot be top down - it can6 be solely bottom up, it needs to be both, and all parties need to be on board .

Forward ME may do valuable and important work, but if membership is at the behest of a single person it smacks of some weird form of gentleman's club , particularly subject to the vagaries of personalities .

We don't do grass roots advocacy well here , but we need to, or suffer the abysmal snails pace ( no pun intended) recourse to address previous wrongs that are epitomised by the " manky blood " scandal , the Hillsborough disaster and the like, where policy / responses have been framed by media control of the narrative , protection if eminence , and a culture of blame avoidance. It seems to be the British way of things where incompetence and dogma meet.
This has no place in the 21st century.

 

[Jonathan Edwards]

I think this is kind of dismissive and unwarranted.

Is asking if there has been any change unwarranted? Surely it is a legitimate question.

And is there an answer?

I talk to people outside the ME bubble on a reasonably regular basis and it is very clear that none of them have any awareness of the existence of MEAction or even of any of the advocacy about ME that we are immersed in. It comes out when people ask what I have been doing recently. The whole thing is news to them. I don't personally see the idea that ME advocacy has had an impact on public awareness as realistic. Not that I think that that is a problem. Having spent my life in medicine I have come to realise is that what matters is getting results that alter care, rather than selling ideas.

I appreciate that the noise that MEAction make is good for morale amongst the ME community and that may be important but the forums had already been up and running and doing that when I first got involved in 2014.

I am all in favour of raising awareness but if you mix that with unhelpful and dangerous propaganda there is problem - a big problem.

I guess I come back to what I have said before. If PWME want to make an impact on what the medical establishment thinks is not a bad idea to try it on me first because I am already a convert. I also know what my colleagues will read into things. If my colleagues hear advocates saying they love all this quackery stuff put out by private physicians and surgeons, they will have their prejudices reaffirmed. If they hear advocacy groups say we don't want be fodder for the quacks, and it is about time you physicians pulled your socks up and worked to the sort of standards of evidence we think are minimum then they might sit up and listen. Let's face it, @dave30th, that is what you and I have been trying to do for five years.

 

[Trish]

Advocacy is not just about raising public awareness, it's about specific actions to raise awareness among politicians with influence, and medical authorities to try to get better funding for ME research, to get better access to disabilility benefits, to get better government guidelines, and better medical education, to get more accurate media coverage in order to spread awareness that ME isn't psychosomatic so patients colleagues, family and friends understand better. I think it's important in many of those areas that all ME organisations get their facts right and work together.

 

[NelliePledge]

I'm not sure if any are officially MEA groups, but my local ME group when I was involved some time ago seemed to indicate it was a local MEA group. Maybe I misunderstood.

They have a list of local groups as does AFME. But the charities don’t have any involvement in running them or supporting them. Some local groups are charities in their own right, others are very informal basically just a private Facebook group. any links to the charities is pretty much dependent on the individuals in any location. There are many areas of the country that don’t have ME local groups or if they exist they don’t engage with the charities and are not listed. The city i live in has over 200,000 residents and no discernible ME group. Probably I have gone off topic for this thread.

 

[Esther12]

I think this is a key issue. Brea talks as if she has authority to give opinions on medical matters. She has made it clear she wanted MEAction to provide authoritative medical information for patients yet sidestepped the opportunity to bring in people with expertise to advise. She gives the impression that her essays on spinal issues are based on anatomy and physiology when in fact they are a jumble of out of context ideas. If there had not been push back from various quarters I suspect the whole of the MEAction information site would be awash with pseudoscience.

Moreover, Brea has been told time and time again that her outpourings are from a medical point of view unwarranted and irresponsible yet she refuses to accept any criticism. And there has been not a peep from MEAction about concerns over the material.

I don't buy the idea that only professionals have responsibilities to get things right. If patient led organisations set themselves to inform they have exactly the same moral obligations.Empowerment brings with it responsibility.

I wouldn't fancy trying to provide authoritative medical information on ME, but have MEAction provided any information on CCI/spine stuff other than the statement they co-signed raising concerns about it?

Everyone has a responsibility to work to get things right, and there are things about the way Brea has behaved that I think are irresponsible, I'm just far less sure that it's fair to blame those at MEAction for this.

I'm sure that we wouldn't think that MEAction had a responsibility to investigate and challenge every claim made by anyone who'd volunteered for them, but also Brea is much more than the average volunteer. I think that I would probably give more leeway to volunteers at a patient group than those with real power and significant incomes within medicine, but also, those with real power within medicine tend to do so much less to challenge their colleagues than you seem to think MEAction should do with Brea.

Am I being too lenient with MEAction? Or is it unreasonable to expect patient volunteers to impose so much more demanding standards on those they work with than the standards of well paid professionals? What has Action for ME done to disassociate itself from Crawley, Miller, etc, etc?

re what ME advocacy actually achieves.... I don't like to think about that.

It seems like those who rise to the top in academia seem to be the sort of people who care about avoiding bad headlines, and MEAction have helped generate some bad headlines.

My views may have been influence by just watching a silly movie about the neighbours of a frat house, with Lisa Kudrow playing a University dean:

 

[AR68]

This.
Millions missing has raised awareness hugely and got some positive mainstream reporting- in multiple countries.
Research is desperately needed but equally so is changing the sociomedical narrative that frames perceptions and interactions and challenges the status quo.
Change cannot be top down - it can6 be solely bottom up, it needs to be both, and all parties need to be on board .

Forward ME may do valuable and important work, but if membership is at the behest of a single person it smacks of some weird form of gentleman's club , particularly subject to the vagaries of personalities .

We don't do grass roots advocacy well here , but we need to, or suffer the abysmal snails pace ( no pun intended) recourse to address previous wrongs that are epitomised by the " manky blood " scandal , the Hillsborough disaster and the like, where policy / responses have been framed by media control of the narrative , protection if eminence , and a culture of blame avoidance. It seems to be the British way of things where incompetence and dogma meet.
This has no place in the 21st century.

"gentlemen's club".

As I mentioned (I think elsewhere on S4ME) I attended every single APPG on ME between April 2006 and March 2010. I almost always attended the meetings with my RFH research colleague and often we would meet the head of RiME there. Whereas I never talked at any of these meetings my colleague and Paul Davis (head of RiME) would. To cut a long story short, they (I believe) often asked more pointed questions than other attendees and, over a period of time, were seen as an 'awkward squad'. A number of fellow campaigners in the room didn't want us there and, eventually, started to use online forums to exaggerate about their (and through guilt of association my) behaviour; a 'group think' began to emerge.

After one meeting myself, my colleague and a fellow campaigner were standing outside one of the committee rooms waiting for the lift. A police officer approached my colleague and led him away. He had been questioned after the CoM had made a complaint. He was told that she was not unused to doing this and he was released.

I rarely chatted with anyone else as I felt there was a 'clique'. Do I think anything positive came out of the meetings? No. But we were frozen out, I believe - and with the support of a number of campaigners in the room.

 

[Sly Saint]

I think the UK desperately needs a proactive advocacy organisation like MEActionUK

Yes, and #MEAction Scotland. I think @Jonathan Edwards described @Emsho Emma Shorters 'testimony' at the Scottish Parliament as one of the best pieces of ME advocacy. Without them I doubt Carol Monaghan would have got involved. Certainly it cannot be denied that #MEAction UK and #MEAction Scotland provided a real voice for ME patients and presented a real alternative to AfMEs 'collaborative' approach which was largely part of the problem.

 

[Dx Revision Watch]

I'm not sure if any are officially MEA groups, but my local ME group when I was involved some time ago seemed to indicate it was a local MEA group. Maybe I misunderstood.

The ME Association used to have a network of local MEA groups which were affiliated to the main MEA - but this was years ago.

This arrangement was dissolved and if my memory serves, the then Board of Trustees appropriated these local branches' funds.

This took place before Dr Margaret MacDonald, Research Director, resigned, along with a number of trustees, prior to Dr Charles Shepherd's election as a trustee (in December 2002) and prior to the departure of the MEA's CEO, Val Hockey.

@AR68 may recall in which year the MEA terminated its affiliation with local MEA groups.

 

[Kitty]

The ME Association used to have a network of local MEA groups which were affiliated to the main MEA - but this was years ago.

This arrangement was dissolved and if my memory serves, the then Board of Trustees appropriated these local branches' funds.

The local group I belonged to was operating in the 1990s; and yes, I remember the funds being 'centralised'.

I rather drifted away from the MEA at that point. There was lot of controversy swirling around for a while, and I didn't have the energy to separate fact from opinion in order to try and make my own mind up about future directions.

 

[Kirsten]

I'm not part of MEAction, i'm too ill. But ME Action have had a huge impact in Scotland in terms of getting the parliament to take it more seriously, and i'm sure they have played a huge part in SNP trying to be better for us as patients and trying to change things. Recently, because NICE is only advisory here, they issues a statement warning dr's that they no-longer stood behind the previous NICE guidance, and GET/CBT shouldn't be presumed to be effective. I'd be surprised if Carol Monaghan (SNP MP) wasn't introduced to the topic by MEAction and their activitism within Scottish politics, and Carol's been really helpful. Another example, is their millions missing protests, which allowed me to feel i was doing something at a time i was 80% bedbound and that was powerful for me and my mental health at the time. They empowered me to do something meaningful. It also was an amazing visual that helped a lot of my family and friends to understand a bit more about ME and what it really is like. So i'm very greatful to them for that and the conversations it has stirred.

I think it's good if we have "bottom up" organisations of protest and also "top down" organisations. As they are both able to play different rolls in achieving the same goal. So, from the other end, i'm also hugely grateful to charities like ME Association. Their information was a lifeline when doctors were saying there was nothing wrong with me and i was just lazy, or when they then moved on to forcing me to exercise and messing with my head. When i got the MEA info i finally felt heard and seen and it really helped me learn how to pace, grieve, and what to avoid or ask for. I also feel i owe them a debt of gratitude for their work with Government and benefit agencies. I get too upset thinking about my experiences with DWP/ATOS but MEA helped me so much, and for that i will forever be grateful.

This next bit is a bit ranty, sorry, you don't have to read it but it helped to write it

If you want to get specific about the question of has MEACtion actually changed anything?

In one sense i think they have, as mentioned above and in so many other ways, esp where i am in Scotland.

In other ways, to be honest, it more often than not feels like nothing at all has changed in the last 25 years I've had this. That nothing MEAction, or any of the other charities, or any of the other interested doctors who come and go over the years, has actually changed anything. In my head i know that's not the case, and things seem to be turning, (painfully slowly), but we've thought that before and been hurt (2007 NICE guidelines anyone..., XMRV...) Has anything actually changed?

I still am disbelieved and treated appaulingly by almost every medical professional i see. (To my friends and family that sounds like an exageration, like how can the blessed NHS be like that, but it's not an exageration). I still have no help, no treatments, and even to get things that would help with symptom management i still have to fight for those. I was in agony, at a suicidal level for 3 months, and it was only when my supportive gp admitted me to hospital and my parents refused to take me home that they did anything to help. And that's not unusual for ME patients. I still had to fight for benefits and go through that dehuminising experience where it seemed to be fine for them to lie all they liked about me. Again, only getting the minimum amaount due to my supportive gp. It's still referred to yuppy flu almost every time it appears in a newspaper, allbeit now, "previously known as..." ME is still the punchline of jokes about laziness and slacking. The prejudices still abound.

So, has anything changed in real terms? That depends on how you view what MEAction, MEA, Forward-ME etc... and the various players are doing. They've done as much as any other, and filled a gap. Personally i'm grateful for all those well enough who are able to fight when i'm not, and even more for those who enable me to fight too, even if that's from my bed.