United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

rvallee said:
At least this settles they can't be trusted for anything, can't actually learn. No matter what, they will keep doing the same things, for their own purposes. They simply don't understand what the words mean, and it's become clear that illness is an experience that absolutely has to be experienced in order to be understood, as fully as it's almost always needed to actually play an instrument in order to be a musician. And the only exception would be conductors, and they usually are musicians anyway. Just knowing about sheet music doesn't make one a musician.

Obviously, though. It's possible to go from being wrong to getting it right, but not from a position of denial. There is no half-way between reality and denial of reality that works out in real life.
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this.

I think 3 years on the one thing that this new document and other behaviour certain 'players' have been up to confirms - and I really hope that people who need to see through them now because they are also the 'how dare you mention past behaviour, "we've changed"' gang of silencers who aren't up to much - that it is the people that were and now certainly are 'the problem'.

Turkeys don't vote for christmas in every situation, but what has been exhibited in the context of this and certain other bunches in bps is a level which I doubt has been allowed to carry on in many other contexts and relied on the sheer vulnerability me/cfs had, particularly those in the less privileged/supported situations (who get elbowed out of speaking for themselves and frankly few who are in the positions are happy to not believe the situation but assume and psychologise it as 'must have happened differently/been something you did or are different to me etc), due to the slurs and tropes that have provided power and suggested it 'isn't that bad'.

And I mention this because this coercive situation, ongoing, needs to be fixed before things can move forward given they've deluded themselves that someone who is losing their job, family, house, future, kids and is in front of an individual whose notes can remove this and indeed put question marks over their freedom or capacity as well - and is fresh to the illness and just needs any note to save their job and not lose them their job in the 'urgent and important' column above the 'will that harm me in a year's time' is not in a position to be giving experienced info on the condition and 'did this help'.
 
MrMagoo said:
I feel like BACME need to see this.
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The problem is that they can't even if they look at it, but are blinded and actually can't see anything other than their beliefs instead of what actually is in front of their eyes when they see a patient or this.

SO when a BACME person sees a very ill person who apparently can't move or see light they 'see' this fictional picture they've had sold to them of what 'sensitisation' and 'deconditioning' can end up in. Someone milder not doing their usual sport as needing support with their fears over the sore legs after, before those fears 'get out of hand and take over them to lead to decrepidness from sitting on the sofa too much, but less than a great % of teenagers and adults who can might do with no ill-effects'

I don't think they go so far as to realise that even with very old people this takes the idea ad absurdium of 'some people just decided to lie down for some reason and become more hermit like until we have all of this to unpick because their body becomes so unused to life that it leads to this level of 'illness''

but once they are on that train then they are surrounded by other yes men and see all patients who don't improve as 'examples backing up their suspicions' and the whole thing gets out of hand.

It would genuinely, and I say this with interest for cognitive psychologists to do on priming etc (not as some 'pun or one-liner'), be interesting for things like this to be put in front of different individuals with different levels of brainwashing (I think for example teaching profession had a lot of behaviourism influences in training in certain areas in certain times on certain things) and ask them what they 'see'. It is incredibly powerful.
 
MrMagoo said:
In my minds eye I’m seeing a pie chart of how much of a document refers to “increase” of activity (say, 25%) vs how many pwME have “found” their established baseline (say, 10%) then increased beyond it by choice, without consequence (about 1%)

The greatest work for pwME is getting used to having ME and pacing, it takes years and years. The “increasing” by choice part is so very rare and unusual and it gets talked up so much in these documents. It creates a psychological pressure that you should be able to, also there is the tantalising unspoken temptation of (whisper it….)maybe getting back to normal?
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I still keep doing it. Every time I feel a tiny bit better, able to do a bit more, I keep overshooting and making myself worse even though I only ever slightly increase. And every time I draw back it stabilizes. It's maddening.

There is no amount of us telling them these things that seems to matter. It's all wishcare, and they always judge themselves based on their intentions, while we keep judging them by the (completely lack of) results.
 
Dolphin said:
BACME AGM 2026, Janauary 26, 18:00 BST

Go to,
https://bacme.info/event/2026-agm/

Doesn’t give much info.
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As per usual the most annoying thing is it is members only.

Any members of BACME here? :sneaky:

Joining BACME​


Membership of BACME is open to UK-based healthcare professionals and researchers involved in the diagnosis and/or treatment of ME/CFS using clinically effective practice.

All members must agree to abide by our constitution: BACME Constitution

Membership fees are currently £35 per year (£15 for students/trainees)

Membership fees help to support the running of our website and the provision of educational events which are free for BACME members. By supporting the work of BACME you are also supporting the collective work of specialist clinicians and services and together we can promote the importance of specialist ME/CFS care and work towards expanding and improving NHS services.

If you are not an NHS professional or not based in the UK, please contact us at info@bacme.info before proceeding with membership application and provide details regarding your role supporting the delivery of care to people with ME/CFS.
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(I've not looked at the BACME constitution.)
bacme.info

Why Join BACME? - BACME

Join BACME as a member to become part of the network and help us address the issues of ME/CFS effectively together
bacme.info bacme.info
 
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