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

Yes, all I am realistically hoping for from the revised NICE guidelines is that they make clear how serious a medical illness ME is and that it exposes the 2007 guidelines for what they were/are - eminence based medicine. That ME/CFS can be a long term illness(decades, not years) and people with ME/CFS deserve access to healthcare like every other patient gets. That our GPs should be supporting us and not abandoning us and that severe patients get the support and healthcare they require, including access to social care and disability benefits. Additionally, that they deal with the problems that parents of children and young people face.

 

I think this is a salient point. Many professionals couldn't join BACME before. Many of them might decide to do so now.

Since the organisation represents its members, a broader range of members will mean it has a broader perspective, too.

E.g., it might be quite a different organisation if all the Doctors with ME and Physios for ME members signed up tomorrow.

 

It's possible if as @Simbindi says new members with different ideas join up up and dilute the opinions of current members.

Unfortunately,in the short term at least, no, i really doubt it.

Already BACME have had a conference discussing their dysregulation hypothesis which replaces the deconditioning hypothesis. The treatment for both being the same, of course. A technique designed to distract and muddy the waters as the hypothesis is irrelevant when the treatment doesn't work.

They are aware and have cheerfully gone on failing to gather long term.follow up information, failing to accurately define let alone report harms caused by the treatment they inflict.

Personally, I think therapists who see nothing wrong with the status quo with regard to patient safety and informed consent are as big a problem as the treatment itself.

 

Yes, I was definitely thinking over the long term, in years not months.

Edit: In the same way Action for ME is gradually moving in the right direction, but still needs to be challenged when it gets things wrong.

 

Sorry for not knowing but what are the mechanics of this organization being involved with patients? I cannot understand why all of these people are just allowed to sit around hypothesizing and are somehow given access to NHS patients.

 

This is an organisation whose members are some of the therapists delivering treatment on behalf of the NHS.

https://www.bacme.info/

 

They are an organisation for professionals but state they have patient representatives. The names of these reps are not provided, but the Sussex and Kent patient organisation is a member, which would indicate that their patient representatives are drawn from this group.

 

I am guessing BACME was set up after the introduction of the 2007 NICE guidelines because there was subsequently national funding provided to set up specialist 'CFS' clinics across England, so the professionals working in these clinics 'needed' an official body to represent themselves, network etc.

It is because BACME is the 'official' organisation for those professionals working in all the NHS CFS/ME and apparently now other 'fatigue' clinics that their activities and published output needs to be monitored by us.

 

Thanks for explaining. I have had the illness for a long time and have been helped by my GP (although she is the only one at the practice who will help me). As these services do not help, I was having trouble understanding the situation. I think I unfortunately still cannot quite believe that people are really being "offered" these things on some level - I know intellectually it's happening and happened, but the reality just leaves me stunned. Does anyone relate to this?

I have had this illness for a long time so it just seems "normal" to me - it exists, PEM, etc - and I have been taken aback in the past year and a half by just how few medics even seem to know what it is. I think maybe even though I knew things were bad it was worse than I thought, because it's surreal that it could be this bad. The idea of people being in a professional organization about this illness in the context of the 2007 guidelines is just a big blank to me. Does anyone else feel like this?

I really hope someday this can all be put behind us. There is evidently a long way to go.

 

There are probably others on the forum who understand the history of BACME much better than myself. I have only got involved in patient discussions since joining this forum, I've never had any other patient group involvement. I joined here because I was aware that NICE was finally reviewing its outdated guidelines and wanted to have some involvement (from my bed) in helping better guidelines be created.

I was never personally harmed by the 2007 NICE guidelines as no doctor (in 30 years) has ever suggested I undertake GET or 'CBT for CFS', but on the other hand I never pushed to be referred to a specialist service and have accepted there aren't any available treatments that work to treat the underlying cause(s) of ME. I did ask a previous GP for a referral about 10 years ago because of needing to claim ESA, but when I spoke to the service they told me all they offered was help in learning how to live with the condition and nothing for someone like myself who had been living with it for 20 years anyway. At least they were very honest about that and I was able to state that on my ESA forms. However, I noted on the surveys about harm from GET and CBT some patients who had undergone the sessions at this same clinic stated they had worsened, so I guess it all depends on the individual therapist at these clinics. I suspect a lot depends on the clinic lead too, and there is often a high turnover of staff in these places.

 

The organization has a document on PEM on its website dated Aug 2021 (as is the "dysregulation" document). Did they not have one before? Does anyone know if this represents a change in position from prior to Aug 2021?
(Sorry if this has been covered.)

 

Are there any plans to stop referring to it as "CFS/ME"? I know we have other battles but this term should die in my opinion if the new guideline is published; there is no reference to "CFS/ME". I just shudder every time someone uses this. The NHS should not be using a term that is not in any guidelines or used by other medical authorities.

 

I think this guideline will be the start of the end for 'CFS/ME'.

 

These are new documents, added in the past month. There are people in BACME driving for change, and there are those who are more wedded to the old narratives. I sense a 'managed climbdown'.

 

I found that over the years more of my GPs keep insisting on referring to ME as 'CFS' (for example in referral letters), which seems to be what the NHS coding systems states is the 'preferred term'. So for that reason I encourage my current GP to use the compromise term 'CFS/ME', which is likely to change to 'ME/CFS' in the new NICE guideline. I think the change in the ordering of the terms is a major step forward, but it is gong to take a lot of campaigning to get the medical profession to just use the term 'ME' (which is the term my GP used 30 years ago).

 

Ah, goodie. The "experts" on this disease, who have been "working" on this disease for years, have finally come around to understand the very first thing about this disease, or at least pretend to. At this rate, they may even get around the 101 stuff by the end of the millenium. Maybe.

 

This organization will have to change its name - BAMEC?