IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

[Liv aka Mrs Sowester]

It would help matters if someone actually wrote the definitive guide to GET. These 'does GET actually work' conversations will never get anywhere because there is no actual definition of gold standard GET.
We might as well discuss fairy to pinhead ratios for optimum dancing.

 

[petrichor]

The people I know who have had NHS CBT at a CFS service and found it helpful, when I enquire further, all seemed to receive support with coming to terms with being ill and adjusting to it. Not the PACE version of CBT at all.

That's also my experience with CBT at CFS clinics. It was just about management, support, and any other issues I wanted to talk about. The psychologist that I saw told me that CFS was physical, and the CBT was about managing it.

 

[Invisible Woman]

It would help matters if someone actually wrote the definitive guide to GET. These 'does GET actually work' conversations will never get anywhere because there is no actual definition of gold standard GET.
We might as well discuss fairy to pinhead ratios for optimum dancing.

Yes it would but I suspect that is why the BPSers have been so very deliberately slippery with terminology. To make their brand of treatment more acceptable.

I also suspect that is partly down to the very good intentions of some therapists at some CFS clinics. They deliver the appropriate treatment for the patient while letting the powers that be thinking they are delivering something different. I can see why they would do it but it means the powers that be then think PACE style CBT is helpful.

 

[Binkie4]

I had CBT at a NHS chronic fatigue clinic but it was not proper CBT.

I have had experience of CBT ( nothing to do with ME) where challenging beliefs was an essential part of the process but the CBT at the CFS clinic was not like this at all.

I would describe it as a sort of mix between counselling and psychotherapy. As far as I remember, it consisted of 4/5 sessions of addressing general stressful issues ( wider family matters), nothing to do with changing my beliefs, or even addressing my adaptation to ME.

At that time I was doing well with ME, and had adjusted myself during the lengthy wait for the appointments.

EDITED to add: just for clarity, I think the process of adjusting to ME is an ongoing one, not achieved as a one off event. The illness changes, we age, so I see adjustment as ongoing. Ten (or 32 years in depending on how the start of my illness is defined) years in, and I am in a different place from 8 years ago when I had so-called " CBT ".

 

[Valentijn]

It would help matters if someone actually wrote the definitive guide to GET. These 'does GET actually work' conversations will never get anywhere because there is no actual definition of gold standard GET.

I'm not sure the form actually matters - hardcore GET (ignore symptoms) obviously doesn't work, but neither does symptom-sensitive GET. The latter simply doesn't cause as much damage. We need a higher standard for what "works", beyond "doesn't make me sicker".

Even pacing doesn't result in a cure, recovery, or improvement of the disease itself - it just reduces exacerbations of symptoms, some of which may have been constant.

 

[Adrian]

Nacul's argument is an important one.. The other thing that strikes me is that if it is agreed that PEM is central to the category of ME/CFS, CFS/ME or ME+CFS that the guidelines will be for then there is an immediate problem with studies that voluntarily recruit patients to possibly receiving GET. It is highly unlikely that People with PEM will want to be included. And Oxford allows all the people without PEM through, to have the effect of GET on them studied. This is a consistent problem with all the Oxford studies that include GET or GET and CBT.

So Oxford is no good if trial design biases out all (or even most of) the Canadians. So although Oxford is reasonable to use on a purely set theory basis, if we know that the probability of the right subset being included is seriously biased against we have a positive reason to reject an Oxford sample.

With PACE I think it is interesting to look at recruitment where they assessed 3158 patients but only ended up with 641. Reasons for drop outs included contraindication to trial treatments=84, Refusal to be assessed/Randomised=554

http://www.thelancet.com/action/showFullTextImages?pii=S0140-6736(11)60096-2

So that suggests some form of patients deciding not to take part or the assessors deciding treatments would not be good. Hence selectivity. Not sure how this fits with Nacal's 1 in 15 meeting CCC.

 

[Adrian]

Doesn't Oxford criteria exclude those with neurological signs? This sounds like a permission to exclude many ME/CS patients, because I'm pretty sure that a determined doctor could easily find some neurological abnormalities. I can't walk straight with closed eyes for example (tandem gait test it's called I believe).

I think some of the doctors pushing Oxford would deny the neurological signs are neurological because the patient has CFS. Hence they could be included?

 

[Amw66]

OK, but I don't think I would classify that as psychotherapy. It sounds like being given support and helpful advice. I think Simon Wessely would regard this as not being what the PACE trial was set out to test!

There are very few specialist centres in Scotland. East Lothian Council run a service which they advise ( vocuferiusly) they see people doing very well with GET. I do wonder the reliability of original diagnosis. This is a joint funded operation.

Edmesh are the local support organisation and it may be worthwhile putting a few feelers out via them.there is a local MEA rep in Edinburgh.

Emma Shorter who coordinated the million s missing campaign went from walking to wheelchair bound under the specialist clinic in Edinburgh ( BPS school), and is trying valiently to get GET dropped.

On west coast we have absolutely nothing. And noone " with an interest".
I was viewed with concern by paediatrician when my daughter could not attend camhs or school, and sleep did not respond to " shifting in 3 days".
Scottish guidelines are informed by NICE, but there are none specifically for children.

 

[Jonathan Edwards]

With PACE I think it is interesting to look at recruitment where they assessed 3158 patients but only ended up with 641. Reasons for drop outs included contraindication to trial treatments=84, Refusal to be assessed/Randomised=554

It is interesting that they recognised that some treatments might be contraindicated. Why would CBT be contraindicated? And presumably SMC and pacing would not be so it would have been GET? That sounds pretty much like excluding anyone with PEM. A lot of those refusing to be assessed might well have had PEM and realised they were not going to want to chance getting GET.

Maybe what is needed is an agreement that PACE does not apply to people with PEM.

That leaves the earlier Oxford studies. I have not been through these yet in detail but my impression is that the only truly objective change may be in cardiovascular fitness in one group (?reduction in heart rate on standard exertion). That may be objective but it is not a measure of improvement in ME/CFS. It is a bit like the CRP going down on an IL-6 inhibitor. IL-6 inhibitors block CRP production regardless of whether or not they do anything to the disease that might have put the CRP up. So improved CRP is not a measure of improvement in this case.

 

[Indigophoton]

Maybe what is needed is an agreement that PACE does not apply to people with PEM.

Wouldn't PACE be ruled out as evidence anyway, on the grounds that it is scientifically unsound?

 

[Daisymay]

Go here, ask for recovery stories https://www.reddit.com/r/cfsme/

One user wrote



Another user claims to have recovered with LP.

That's the kind of patients you're looking for. People who really seem to believe in CBT/GET, LP.

You'd need to be sure they had ME in the first place if they truly recovered with LP.

 

[Adrian]

My suspicion is that what is needed is simply for occupational therapists to be retained to deliver ongoing advice on activity management, sleep etc.

Also OTs can be helpful for things like equipment to help people with limited mobility. For example, we had extra stair rails put in and a bathlift with additional grab rails. Even things like advising about having appropriate seating in the bathroom and kitchen can be useful. Also the wheelchair services tend to be run by OTs so links here for people needing wheelchairs would be good.

 

[Trish]

Seems to be a completely different bunch of OT's, @Adrian. The one I saw from the local ME service, when I asked about advising me on equipment and adaptations, even though she was visiting me at home, said 'that's for the uniformed lot, we don't do that'.

I've never been offered any kind of home assessment or equipment. If I need something, I buy it on Amazon, and/ or employ a builder myself (eg for putting in a ramp).

 

[Jonathan Edwards]

'that's for the uniformed lot, we don't do that'.

This seems to me to be inexcusable. 'Not my problem, mate', despite being an OT. This is where the real meaning of 'multidisciplinary team' becomes clear - passing the buck round and round team.

 

[Adrian]

Seems to be a completely different bunch of OT's, @Adrian. The one I saw from the local ME service, when I asked about advising me on equipment and adaptations, even though she was visiting me at home, said 'that's for the uniformed lot, we don't do that'.

I've never been offered any kind of home assessment or equipment. If I need something, I buy it on Amazon, and/ or employ a builder myself (eg for putting in a ramp).

My wife was an OT and when she worked on a ward spend most of her time visiting patients homes with them and making sure they were safe and that patients could cope when they were discharged. From what I remember OTs specialise in different areas so maybe the wrong OTs are in the CFS services. But I do think it would be a useful service to provide.

 

[Invisible Woman]

My wife was an OT and when she worked on a ward spend most of her time visiting patients homes with them and making sure they were safe and that patients could cope when they were discharged. From what I remember OTs specialise in different areas so maybe the wrong OTs are in the CFS services. But I do think it would be a useful service to provide.

I had a relative in hospital and she was passed from the original OT (really helpful and understanding ) to a different OT (who wasn't really interested at all) on discharge from hospital.

 

[Trish]

This seems to me to be inexcusable. 'Not my problem, mate', despite being an OT. This is where the real meaning of 'multidisciplinary team' becomes clear - passing the buck round and round team.

Thank you, @Jonathan Edwards, that means more than you can have imagined when you wrote it! (I'm having a feeling vulnerable day).

But I do think it would be a useful service to provide.

Totally agreed. Much more useful to have practical help to make life more manageable than some idiot trying to make us think differently.

 

[Binkie4]

@Trish

I've never been offered any kind of home assessment or equipment. If I need something, I buy it on Amazon, and/ or employ a builder myself (eg for putting in a ramp).

I may be out of date but I think Social Services Departments have a responsibility ( have forgotten the Act) for assessing and fitting " aids and adaptations" for people with disabilities, and they do this via an OT assessment. I think it's a means tested service.

The CAB is a pretty generic source of advice on where to go for help, and may be able to advise on this.

 

[Invisible Woman]

@Trish


I may be out of date but I think Social Services Departments have a responsibility ( have forgotten the Act) for assessing and fitting " aids and adaptations" for people with disabilities, and they do this via an OT assessment. I think it's a means tested service.

The CAB is a pretty generic source of advice on where to go for help, and may be able to advise on this.

I know of one case where someone had the local authority come into their home and remove all the aids that she had previously been assessed as needing. Why? They were suddenly advised that the use of aids was not advised for people with ME. By providing aids they were contributing to her illness.

ETA - this happened in the last year or so . Fairly recent.

 

[Valentijn]

Seems to be a completely different bunch of OT's, @Adrian. The one I saw from the local ME service, when I asked about advising me on equipment and adaptations, even though she was visiting me at home, said 'that's for the uniformed lot, we don't do that'.

One form of occupational therapy is rehabilitation, which of course is not appropriate when you have an incurable disease and you need adaptation instead.

I think what we really need is to keep all (bio)psychosocial practitioners far away from ME/CFS patients. Even if counseling is needed, it's better off coming from a shameless dualist who isn't going to try to cure your biomedical disease in the process of treating depression or other issues.