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

I have looked through relatively quickly. A lot of it is reasonably sensible and free from anything downright dangerous. But there is still a lot of flannel and giving of unsubstantiated advice.nThe dysregulation bit could certainly be left out.

The bit that concerns me most is the advice on fluid and salt which as far as I know is entirely unjustified. I do not think anyone should be encouraged to take more salt and 6grams sounds a lot.

 

still sticking to their 'boom and bust cycle' although it says
"‘Boom and Bust’ cycle whereby they push themselves to do more on a better day then feel more ill the following few days and are forced to reduce their activity levels due to the escalation in symptoms."

the explanation is for 'push crash cycle'.

Some might say its just semantics but a) there is no 'boom' in energy. and b) by acknowledging that 'pushing' is bad is much more in line with PEM (ie post-exertion) and highlights that 'pushing through' (eg as in GET) is detrimental.

They seem to want to have their cake and eat it.

eta: this bit is welcome though and needs to be more widely understood by GPs
"Home Visits
Although the demand on primary care time is high, it will be appropriate for some
people with ME/CFS to be seen at home. It is possible that someone with moderate ME/CFS may have times when they can leave the house and that can lead to them not being classed as housebound and therefore judged as not eligible for home visits. However, as ME/CFS is a fluctuating condition it is important to respect the patient’s report of how badly they are affected at the time they are trying to access care and the potential detrimental impact that
the demand of attending the surgery will have on their symptoms."

 

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.

 

New BACME document: ME/CFS Care and Support Plan Guidance

 

is it normal practice to have such a formal contract-like document, needing to be signed by the patient, or is this just covering their backs?

 

Documents like this are increasingly standard in patient care.
They are standard in care of the elderly and I think widely used wherever an ongoing policy of action involves several people and merits an agreement on the level of activity and what constitutes adequate provision. That is often in situations where there are non-professional carers as well such as members of family who want to be sure they know what the plan is.

My own experience of documents like this is that they often look pretty pointless once written but the fact that they have been written tends to ensure that health care workers having thought through what is actually planned rather than just assuming the system will work.

 

I have not read it through fully yet, but on first glance it looks positive. I particularly like the idea that information to support PIP applications should be recorded and included, as many find it almost impossible to get the doctors or care professionals to provide the necessary supporting information.

 

Gosh, wouldnt it be lovely to have one of those plans, written in conjunction with a HCP who understood ME, had time to put the plan together & fill it all out accurately. Seems a pretty forlorn dream tbh.

I guess if you under a clinic it might happen, but no GP or consultant has time for this. Comes back to the case for specialist nurses. Trouble is at this point a specialist nurse is likely to be so sold on the fatigue, sleep hygiene, BPS drivel, that i wouldnt want one anyway, it's do more harm than good. Until things change significantly i will be keeping my head down.

The doc itself looks pretty good though - esp as it came out of BACME. The issue is the opinions/ideology/training/beliefs of the health professional involved. IF they think you can get better through pacing-lite at best, its not going to be a good doc in practice. Same as a composed piece of music will only ever be as good as the musician playing it

 

1ots of statements and ratings in there that are comp1ete1y meaning1ess to me (as someone with autism and ADHD). I've got to the stage I refuse to answer questions that force me to make random judgments with no basis in rea1ity.

And why do I need to have goa1s set in any care p1an! Of course I do have things I'd 1ike to do, but they tend to change moment by moment...

 

Thinking about this, this concept (setting goa1s) is very much based on the 'recovery mode1' approach used in Menta1 Hea1th Care.

 

yes they do seem to be obsessed with goal setting. I had a care plan 13yrs ago for another condition & that had goals in it as well. Its very 'pc' - focussing on what the patient wants/their priorities etc. But the reality is that once you get into all that 'goal setting malarkey - SMART goals etc, you've gone over into corporate positive psychology.

The issue for PwME is that very few goals you would want to set are achievable. Thats what they cant seem to get their heads around, i can want to climb the stairs/be well enough to work all i want, if you cannot gradually increase your activities until you can do those things - if that process doesnt actually work... then its just a demoralising waste of time.

The Wessleys of this world want to pretend their is a "theraputic nihilism", that they have to fight against... frankly in many ways i wish there were

 

It's notab1e that they asked about neurodiversity but comp1ete1y fai1ed to high1ight why it wou1d be re1evant to the care p1an. Goa1 setting for peop1e with ADHD is a1so not just counter-productive, but can be very damaging (and that's for those who may have no physica1 impairments). It's usua11y just setting peop1e up to fai1, thus creating potentia11y very severe menta1 hea1th prob1ems that can increase the risk of suicide. Serious1y they have no idea!

Of course the same issue is there for a1most a11 peop1e with ME, even without the additiona11y (1ife 1ong) neurodiversity.

 

FWIW:

https://bacme.info/event/bacme-agm/

The BACME Board would like to invite all BACME members to join us for our Annual General Meeting being held virtually via Zoom on Monday 23rd January at 6pm.
The meeting will include a review of all the BACME activities in the last year, our financial statement, the voting in of new Trustees and executive board members and a look forward to the next year’s projects.

Guest Speaker
Dr Alan Stewart SAS Doctor with the Sussex NHS ME service is going to deliver a short presentation during the AGM on diagnostic issues titled:

Findings from the Medical Assessment of Patients presenting to an NHS ME Service



If you would like to attend the AGM event please register as ‘RSVP’ below to access the Zoom link

(this event is only open to current BACME members)

 

Can anyone attend and just tell them to close their useless organization?