Article in Bella magazine - 'Please Believe ME' 26 Sep 2019

[Barry]

There's also CBT. Again this doesn't imply ME is a mental health condition. The therapy is used to help people manage their symptoms.

If they said 'cope with' rather than 'manage' I would be OK with that; 'manage' is very ambiguous. I'm sure in one breath they would argue they use 'manage' in the sense of coping, but manage is far more likely to be interpreted as CBT being an active intervention. I suspect the ambiguity is far from inadvertent.

 

[shak8]

I don't think CBT, even of the allegedly supportive kind (as opposed to the directive kind in PACE) involves much possiblilty for venting. At least not in my limited experience of 6 individual sessions. It was all about shutting down those pesky negative thoughts and replacing them with positive ones.

The day I turned up feeling really awful ME wise and was reduced to tears by having to climb two flights of stairs to get to the therapy room, venting was definitely not allowed. I was told firmly that I should have cancelled and come back when I was in the right mindset to be positive, or words to that effect.

Incredibly cruel and selfish of them. I want to scream.

 

[DokaGirl]

My CBT, was not a packaged commercial offering of 6 sessions and you're well: "Thinner thighs in thirty days" type of thing.

It was mixed in with just talking about how things were going, problem solving, and offering practical suggestions.

Venting was involved.

The practitioner called it CBT, but it was apparently a hybrid.


My understanding of the coercive CBT offered to pwME in the UK, is that it is short-lived, and marketed to the government, the medical community, and pwME as a quick fix.

Please excuse my irreverence. I don't mean to denigrate anyone receiving this form of counseling. However, we know promoting CBT as a cure, or to improve ME, is not evidence based.

 

[JemPD]

The day I turned up feeling really awful ME wise and was reduced to tears by having to climb two flights of stairs to get to the therapy room, venting was definitely not allowed. I was told firmly that I should have cancelled and come back when I was in the right mindset to be positive, or words to that effect.

Disgusting.

They seem to have had compassion-removal as part of their "training"

 

[Simbindi]

Disgusting.

They seem to have had compassion-removal as part of their "training"

I am not saying this with humourous intent: I still feel traumatised by my two previous experiences of NHS CBT therapists (neither of which were seen for 'ME-related CBT or GET', but rather after I had asked GPs for counselling to help me cope with extreme life circumstances/severe depression). These were very damaging experiences, which left me worse off than before asking for help. A big part of that was caused by the callousness and indifference of the therapists to my suffering. I then had to 'get over' and reverse this emotional damage, without any further support by the NHS.

 

[Trish]

Hi @Simbindi. I'm sorry to hear you had such awful experiences. Our experience really points to the importance of having some kind of feedback system for harms from psychological therapies. I never told anyone in the NHS about my bad experience.

 

[JemPD]

Appalling @Simbindi I'm so sorry you had to go through that.

 

[Cinders66]

I didn't know anything about AfME before using this forum. Now (having learnt more about them) it seems clear to me that AfME do not want to be a charity specifically for ME sufferers, that is, for people with ME (including those diagnosed with ME/CFS or CFS) whose symptoms include 'post exertional malaise' as we understand it: a worsening of all ME symptoms - not just 'post exertional fatigue' - after trivial exertion (where the 'exertion' may just be cognitive in nature).

AfME want to be a charity for all people suffering from chronic, long-term idiopathic fatigue. This captures a much broader and larger 'chronic fatigue' patient community. In turn, this means their charity can have a much wider appeal and an obviously bigger potential income, as well as being the 'go to' charity for the DWP and the NHS. 'Action 4 ME' having the term 'ME' in their name is very damaging for the ME patient community: they need to rebrand the charity with a more appropriate name - this would be the honest and ethical thing for them to do.

This is also the problem with the current (2007) CFS/ME Nice guidelines - they seem to be written to include all of the patients who meet the Oxford criteria for CFS (although parts of it do contradict this in their wording, the overall emphasis ignores the severity of PEM and the severity of the memory and cognitive impairments that form part of even the 'mildest' form of ME).

This is also my main worry about the current revision of these guidelines. We know that the lay member and some of the professional members and the 'expert' advisors, have an excellent understanding that 'ME (or ME/CFS) with PEM' is the condition that desperately needs an approprite set of guidelines to safeguard and provide appropriate healthcare and management strategies for its sufferers. Unfortunately, there are also professionals on the committee who want to keep the guidelines much as they are and for the revised guidelines to encapulsate this much wider Oxford definition of 'CFS' (or rather CF) sufferers.

It's not helping us at all that AfME seems to be singing from the same song sheet as these broad 'Oxford defintion of CFS/ME' supporters.

There is an irony that at their upcoming AGM they have a workshop for professionals on how CFS isn’t correctly lumped with MUS.
https://www.actionforme.org.uk/news/our-agm-and-conference-what-workshops-you-can-attend/

The problem is the refusal in UK of charities to rally round ccc criteria When it came out, plus the extremely open “we are for all CFS which is the same as ME and we won’t define it or promote any criteria” stance of AFME over the years, is what left room for the weak nice criteria, daughter of the oxford criteria, to be , imo rather craftily devolped, and for CFS in the UK To carry on being presented as some kind of fatigue spectrum thing. In other words afaic it facilitated the CFS is an MUS like IBS rubbish.

I recognise the desire not to leave people in the “without diagnostic Label” wasteland, on here people still are talking of that, but letting ME become CFS and broaden out to the “ fatigued with symptoms” and letting them in our boat just essentially stopped the ship carrying people with heavily burdening ME from moving forward. They got a shelter and support of kinds , we got stranded. I would suggest that it saved people at the mildest end with borderline symptoms (who ofcourse need support and care etc) at the expense of the severe, who now barely get recognition let alone care or research. And AFME might have other reasons for their stance. They confuse me tbh. I mean why on earth did they keep alistair Miller as advisor...

I share your concern regarding NICE but fear What will be delivered is a modification of GET recommendations rather than necessarily an end to the broad definition of CFS that has suited various interests in the UK well. By turning PEM into PEF or PEM as NICE criteria do, with low symptom requirements on top of fatigue, the BPS lot like Crawley who was a NICE Criteria creator have managed to keep ME buried. I don’t know if recognition of something more ME like is on the NICe committee’s agenda.

 

[Mithriel]

The BPS people who declared ME was now CFS last century and brought in the idea of deconditioning, CBT and GET also declared that there was one spectrum of illness which went from being more tired than you wanted to be to bedbound and tube fed in a darkened room. There was only one illness whose defining symptom is fatigue.

That is justification for doing work on the least affected; if the treatment works for them then it works for everyone. They have now broadened this out to include all the so called MUS as a single illness. They do not believe any of it is a disease, which is what they call damage to the body.

When you understand that, it makes more sense of what they do. That is why they "disappeared" ME; it would be like calling the caterpillar and the butterfly two different species.

Too bad for us, it works for them

 

[Amw66]

The BPS people who declared ME was now CFS last century and brought in the idea of deconditioning, CBT and GET also declared that there was one spectrum of illness which went from being more tired than you wanted to be to bedbound and tube fed in a darkened room. There was only one illness whose defining symptom is fatigue.

That is justification for doing work on the least affected; if the treatment works for them then it works for everyone. They have now broadened this out to include all the so called MUS as a single illness. They do not believe any of it is a disease, which is what they call damage to the body.

When you understand that, it makes more sense of what they do. That is why they "disappeared" ME; it would be like calling the caterpillar and the butterfly two different species.

Too bad for us, it works for them

This