I have read the report from the MEAction representative on the BACME conference. I think it's very worrying that BACME is so wedded to its dysregulation model and the consequent advice about gradual exposure to sensory and physical stimuli. It's clear the ME Action UK group are also very worried about this, to the extent that they have left Forward ME because other members of Forward ME are working closely with BACME.
Is there anything we as individuals or as a forum can do, perhaps in conjunction with MEActionUK, to tackle both the misinformation in BACME materials and clinics, and the closeness being developed between the MEA and AfME with BACME? Russell Fleming of the MEA, and Sarah Tyson and Peter Gladwell's involvment in producing MEA funded PROMs and AfME resources seem to be key. I don't know what other specific links are happening.
@MBailey,
@PeterW,
@Russell Fleming, can you enlighten us further on what is going on?
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.
