United Kingdom: News from Forward-ME Group

@MEMarge - apologies for the delay in getting these to you, we've been rather busy the last couple of weeks with all the various things going on, so thanks @PeterW for the nudge!

Attached are Denise’s notes made during the BACME conference and these were presented to Forward-ME for discussion.
Please note these are not formatted or presented in a way that was for public dissemination and are provided here raw and unfiltered. (Note - I have made 2 edits to remove personal information that could identify patients).

Needless to say MEAction UK have continued serious concerns over both BACME and their involvement with Forward-ME. Following a decision by some members, for Forward-ME to work closer with BACME, MEAction UK withdrew from the group.

 

I find this an incredibly worrying situation, how this has ended up:

It is 1. inappropriate that we've ended up with MEAction having to leave, and 2. A really indicative sign if we now have a group representing 'pwme' that includes BACME instead of MEAction that the other members of the group - whichever ones they were - who decided and didn't hear those concerns regarding BACME made the choice of 'working with' BACME over pwme and MEAction

What is Forward ME now after this development?

 

Perhaps notable that the first speaker, Dr Alan Stewart, who apparently began his talk by objecting to the name "ME/CFS", is also one of the Sussex & Kent group's medical advisors. (Also notable they have a new MP patron: do they have more patrons and medical advisors than active members yet?). Quoting from Stewart's biography from their website:

If things were sufficiently dire as for it to be necessary for ME Action to leave Forward-ME, why did they not share that with the whole ME patient community, and explain the rationale for it openly? Everything about us without us...

 

THIS - Is Deeply disturbing for the ME Community

.

 

I wonder what he prefers?

Medicine no longer follows 'common sense'. It follows reliable evidence.
What success of the service?
etc.

I don't know the answer to Trish's question.
Except of course produce our own S4ME educational literature. That could be done but it needs a lot of energy. I have just co-authored a response to Nath and Walitt from members which has involved a quite amazing amount of effort and skill (not on my part). Maybe the same could be applied to devising some educational materials. But we cannot expect the committee and moderator members who do so much hard work already to do any more.

About four people tends to be good for such a project.

 

A Vote of No Confidence in BACME and Forward ME?

 

Also, if this, quoted from the PDF, is an accurate reflection of what Dr Stewart said then I have some additional questions. I'm not even sure "non-Celiac gluten sensitivity" exists as a validated entity, one cannot diagnose Addison's based on a "cutoff", and the presentation of adult hypophosphatasia doesn't exactly have a lot in common with ME/CFS:

I don't want to read too much into this based on a brief report from a charity volunteer; if someone has a transcript of his remarks I'd certainly like to read it.

Agreed. Perhaps one or more of the charities could co-produce high-quality educational literature with the involvement of some willing S4ME members?

 

I am not sure what a charity would have to offer though. There is no cost involved, just hard work. And there needs to be no political agenda.

 

Stewart appears to be a private physician (for the last 45 years) with quirky ideas on nutrition. How someone like that can be suitable as an opening medical speaker beats me.
There is a generally Stone Age feel about the whole thing.

 

Their endorsement. While we know that any materials produced by a collective S4ME process would be higher quality than those produced anywhere else, most people won't realise that. If we want others (whether clinicians or average patients) to take literature seriously it would be best to have the endorsement of some well-known charities or other organisations.

 

Fair enough, but I would seek endorsement once the materials were ready. I wouldn't want to get into negotiating content or structure in order to get endorsement.

 

Vikki McKeever raises the point of inadequate medical input to services which seems good. I agree that the use of a dysregulation model as a 'basis for therapy' is worrying. The only basis for therapies when we actually have some will be reliable evidence, not any form of theory.

 

The sleep session sounds like garbage.

 

The account of Dr Strain's presentation does not really say anything but hopefully I can see the video.

The session on severe ME/CFS from UCLH does not say anything much beyond the obvious lack of provision. The tricky issues do not seem to have been tackled.

Edit: I don't seem to be able to access the video but I suspect that it is the one we have already discussed? I fail to see why these videos are not freely available.

 

Notable that McKeever mentions the lack of "ownership" by a specific specialty.

If only 10 services have made significant changes post-NICE they haven't really changed their model. (I always regarded the BACME "dysregulation" model to be an obfuscated form of the biopsychosocial / cognitive-behavioural model.)

They seem to be confused about the feeding problems - the description given in the last paragraph on p3 sounds a bit like the descriptions of avoidant-restrictive eating disorder - rather than symptom-contingent dietary modifications to see what is best tolerated.

"Hoping UCLH can establish some inpatient beds" - anyone know more about that? At least it seems as though they're gradually, slowly beginning to understand to what extent severe/v severe pwME have been failed, as they mention things like home adaptations.

Sounds like Chris Ponting delivered some welcome truths.

 

My understanding was that now that Saul Berkowitz has left the service it is just a mixture of psychiatric and unashamed alternative medical quackery. UCLH has a neurogastroenterology set up for feeding support but I think it highly unlikely that there is any link to the RNH for Integrative Medicine.

 

I'm with you @Trish - it is a real surprise from these charities and not something I think that they have been given mandate for by those they represent. Although I think the reaction so far to the situations makes those situations very different indeed.

It would seem we are looking at BACME having in miraculous time managed to engineer a split down the sector, even though really we are all agreed. Pretty much on most things. And were working well.

Except for since BACME's recent behaviours. Which should have been a sign to those individuals and/or organisations who didn't 'see' what a big potential mistake this is. Sorry but I think it's been a win-win for BACME to do what they've done (split the group vs get own way). I don't get at all why when all they needed to do was sit tight and hold the line we've got this from any of the players involved. It was unnecessary and the explanations make no sense and are poor. What they'd really love now is that idea this will end up forcing their to be two different groups, they can claim means 'disagreement in the sector'. When they are the source, and really noone, including pwme they all apparently speak for, agrees with them.

It's just about how much people want to entertain their threats and keep propping up into jobs that don't match what is now needed people who are there because of an old guideline that harmed and a skillset and mindset that no longer fits. That's not going to change and end well. You can't turn rehab behariourist physios etc into the Workwell Foundation, skilled scientists and relevant specialist clinicians and appropriate compassionate and knowledgeable nurses. They'll wonder why you insist on keeping them if you 'expected them to change who they are so much'.

Of course we need to put it back together but it can't be with the bending to BACME in it. The point of having a ForwardME group is to keep the true north even when people get dragged off path. And already that's been undermined.

If it carries on like this then really it needs a removal of those siding with BACME not the other way around. If it is about representing pwme. That doesn't mean not having conversations with them, but on two-way proper terms. That isn't what is happening here it is very much on their terms so how many people within BACME [are actually 'in charge] are we really all planning the new truth around the needs of instead of you know all the patients?

We can't have a whole ForwardME being dragged down by one player being charmed, and I say charmed because I'm hearing the same identical word-for-word stuff coming from individuals who yes seem to have been twisted round fingers a bit with the classic nice-then angry-then nice 'training of people'. Sometimes you have to be on the outside and see/hear the game of 'snap' (ie card game) to spot it. And have enough experience to know it for sure when you see it.

This is why organisations need to have strategies because it keeps from being manipulated as easily as you see how those little tweaks and pieces fit together to the bigger pictures. And why theoretically if players do it right these collabarations should be theoretically protective and useful. But hey, ME again feels like it has fallen at the first hurdle.

 

from what I've heard of them then an adult version of TRACCS sounds like the opposite of what pwme need , particularly the very severe.

But maybe I've read between the lines wrongly?