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

[Invisible Woman]

Mark Baker said:
The existing recommendations are carefully nuanced and crafted to give power and choice to patients.

Errrr...no, Mark Baker

We have people, especially in the South West, who are being pushed by their GPs into CFS clinics against their will. They are literally blackmailing the patient - if you want to continue with medication for another co morbid condition you will have to be reviewed by the CFS clinic.

There has been a history, in some areas, where patients who won't comply with the CFS clinic, or who stubbornly refuse to be "cured" have been sectioned.

We have patients who have some fairly serious co morbid conditions that are afraid to go to A&E, even when they collapse , because they know the attitude they'll be met with when the docs see ME or CFS on their records.

Does it really sound as though patients feel like they have any power or any choice to you?

 

[Jonathan Edwards]

Perhaps he is worried if he removes the CBT/GET clinics, then the funding for those clinics will disappear and it will be more difficult to re-instate the funding for a new ME service in 2020?

I am sure that is what he is thinking or perhaps rationalising. I had exactly the same fears when I first came across the problem - but before I realised just how much people's understanding of the problem needed to change. My concern is in the wording of his response. He talks of a more limited approach to protect what is good - but what exactly is that? And in what sense is it different from just removing CBT and GET, as IiME are asking?

I think there may well be a feeling that a lot of occupational therapists and physiotherapists are in fact using something much closer to pacing in their care. Maybe they are only allowed to do that because OT/physio input is justified by the recommendation of GET. One suggestion made at our stakeholder table was to admit that GET was not what was being provided and talk of 'activity management'. But this puts NICE is a bind because we have no evidence base for activity management either. Moreover, one has to question whether health professionals happy to continue providing advice under the guise of GET are really qualified to handle PWME.

To my mind the honest approach would be to openly discuss the fact that CBT and GET have been discredited with the health care professionals and to debate how best to deliver what is really needed, which is regular follow up and re-assessment with support from people who actually know something about the natural history of the illness. Yet at the stakeholder meeting CBT and GET were not even mentioned in the presentations from the floor.

OK, we can say that Baker is in an impossible position until he has a new committee that can say what it thinks. But Baker himself I believe will retire before the committee comes to a decision. It all seems a mess at present. Maybe these things always are. But I think the way forward is to talk openly about realities - the way Australians tend to - and not try to keep everyone sweet, because in the end that leads to everything going sour.

 

[Valentijn]

There is nothing nuanced or crafted in the guidelines that is being imposed on people for whom the recommendations were not intended. They were intended. 'Some clarification' is not what is needed. Removal of recommendations based on valueless evidence is needed.

As I tweeted to Simon Wessely a couple weeks ago: If everyone is "misinterpreting" you, over and over, maybe the problem is actually with how you're expressing yourself. I have no doubt doctors and patients are mislead by NICE, and it isn't because doctors and patients are too dumb. It's because the current NICE guidelines portray ME/CFS as a disease which is usually easily cured by psychological treatments based on "evidence" from researchers who also advocate lying to and manipulating patients.

NICE likes to pretend that their guidelines exist in a vacuum, but they do not. When their policy is informed by blatant disease-denialists, NICE is implicitly supporting that denialism. The CBT research that NICE bases its recommendations on is not supportive - the research cited is explicit in approaching ME/CFS as a false belief to be corrected. When GET is supposed to lead to recovery, it's apparent to everyone that NICE is saying there is no disease and patients are just lazy, frightened, and/or delusional.

Just because NICE chooses to play innocent doesn't mean that we have to pretend to believe their bullshit.

I meant that the current clinics don't actually do much except CBT and GET, as it stands now, so take that away, and they're out of jobs, and the NHS can't say they have services for PwME.

It would put pressure on the NHS to provide real services for ME/CFS patients, such as routine care, disability aids, and basic symptom management. GPs do not seem capable of handling that much, especially if it involves home visits, so I think there is still a need for clinics. Such clinics could encompass a variety of diseases which require similar support (MS, etc).

But is there not another approach? To study in more depth those harmful incidents that are suspected to have been caused by GET anyway? Maybe with a sort of forensic approach. It's presumably not unethical (provided the proper safeguards are put in place) to forensically analyse harmful incidents that have already occurred anyway. I fully appreciate it cannot be done under tightly controlled laboratory conditions, but if the will and the money is there, could not something like this be viable?

Case studies could help a lot. They aren't RCTs by a long shot, but they're also a lot better than nothing. Researchers can also combine dozens of cases into a single study, which might be more persuasive as well. Perhaps collating those incidents and writing up a report to be published is something that @Tom Kindlon or @Carolyn Wilshire could do, if no NHS doctors are interested.

The logical outcome is that psychotherapists and physiotherapists become redundant.

Hasn't Sir Simon Wessely been sobbing about how underfunded and understaffed mental health services are? Give the CBT/GET therapists a real job, though I expect they'll need retraining and supervision to ensure they do not take the more abusive aspects of their old practices into their new practices.

 

[Invisible Woman]

I think there may well be a feeling that a lot of occupational therapists and physiotherapists are in fact using something much closer to pacing in their care. Maybe they are only allowed to do that because OT/physio input is justified by the recommendation of GET. One suggestion made at our stakeholder table was to admit that GET was not what was being provided and talk of 'activity management'.

The problem with letting this situation remain, as I see it, is that some of them are actually implementing it as per PACE, and push on with it even when they see this approach is not right for the patient.I

How does the patient know which clinic is which? Even if we did most of us can't exactly vote with our feet. Our CCGs would have to allow some to go to clinics outside their areas, and why would they if they already have a clinic.

I think a political solution/compromise like this would leave just as big a mess.

 

[Liv aka Mrs Sowester]

I think there may well be a feeling that a lot of occupational therapists and physiotherapists are in fact using something much closer to pacing in their care. Maybe they are only allowed to do that because OT/physio input is justified by the recommendation of GET. One suggestion made at our stakeholder table was to admit that GET was not what was being provided and talk of 'activity management'.

This was my experience at the Cornwall Clinic - they taught me pacing and said never to push through symptoms. I was told they couldn't make me better, but could help me to be able to do more of what was important to me. They all said ME is a real physical illness.
They were great and if all UK clinics worked like them then it would definitely be a service worth funding.

 

[Sean]

The logical outcome is that psychotherapists... ...become redundant.

You say that like it is a bad thing.

 

[Hoopoe]

@Jonathan Edwards if the situation is similar to NICE recommending homeopathy, maybe we can get some well known skeptics to write about this and reach a broader audience? It won't be easy due to the prejudice surrounding CFS but I like to think that at least some will be able to see that uncertainty on various aspects of the illness is no excuse for rubbish methodology.

The absurdity of the situation is certainly astonishing. An entire industry based on documenting placebo effects, routine p-hacking, and pretending the therapy works.

 

[Jonathan Edwards]

It would put pressure on the NHS to provide real services for ME/CFS patients, such as routine care, disability aids, and basic symptom management. GPs do not seem capable of handling that much, especially if it involves home visits, so I think there is still a need for clinics. Such clinics could encompass a variety of diseases which require similar support (MS, etc).

I agree that GPs should not deliver care, because they are not well enough informed to know what to do. They do not have enough experience. Care should be delivered by someone who has worked with at least 50 patients.

No pressure is put on the NHS if NICE says there is no evidence based treatment. This is the bind they are in.

My suspicion is that what is needed is simply for occupational therapists to be retained to deliver ongoing advice on activity management, sleep etc. I doubt that a physiotherapist is needed for adults and likely not for children. There may be a role for counselling and support but I do not see that a training in psychotherapy is of any help, judging by the way psychotherapists view the problem, so I think psychotherapy should just be cut out of the picture.

I am still interested in finding PWME who have found psychotherapy helpful. There do not seem to be any on the internet lists but maybe they are put off.

 

[Jonathan Edwards]

@Jonathan Edwards if the situation is similar to NICE recommending homeopathy, maybe we can get some well known skeptics to write about this and reach a broader audience?

So, who are the well know sceptics? There is of course Ben Goldacre, who did a PhD with Simon Wessely, and he has proved no use. There is David Colquhoun, who attacks homeopathy etc. but he says he finds CFS too complicated. There are the BBC investigative journalists, but they have said their statistician thinks that PACE is not too bad. We have been down this road a while I fear.

 

[Alvin]

I am still interested in finding PWME who have found psychotherapy helpful. There do not seem to be any on the internet lists but maybe they are put off.

Since this is not a psychosomatic disease the only people who would find it helpful are either stuck in doublethink or spontaneously (coincidentally) improved.

 

[Hoopoe]

I am still interested in finding PWME who have found psychotherapy helpful. There do not seem to be any on the internet lists but maybe they are put off.

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

One user wrote

I've posted this to start a discussion on the PACE trial. In other forums it seems difficult to discuss the PACE trial without descending into personal attacks. Hopefully we can have a proper scientific discussion here if anyone is interested.

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.

 

[Liv aka Mrs Sowester]

I am still interested in finding PWME who have found psychotherapy helpful.

I did.
The psych who helped me at the Cornwall clinic was fantastic, she helped me cope with a difficult family member who was stressing me out to the point I was scared to answer the phone. She also helped me work through some unresolved grief.
She encouraged me to use the wheelchair more to get out to ease my isolation.
She never discussed her views on the nature of ME and at no point did I feel like she was trying to correct 'faulty illness beliefs' and I am pretty good at reading people in real life so I think I would have picked up on any tricksiness.

I think she still works in the UK, I can PM you her name and the name of the consultant if you want to talk to people who adapted what they did to meet the needs of patients. I'm told that the staff I knew are no longer at the service, it closed for a while, but I imagine they'll just be working somewhere else.

 

[Jonathan Edwards]

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

No, to be clearer, I am specifically looking for people who improved on NHS CBT. Lightning Process is not in the NICE guidelines and as far as I can discover most of the recovery stories are about other approaches. I could not track down the reference to PACE - can you point to that more specifically. I also worry that this page is heavily stage-managed by somebody.

 

[Hoopoe]

I could not track down the reference to PACE - can you point to that more specifically.

It's here

I don't know how to find people who think NHS CBT has helped them.

 

[Jonathan Edwards]

I did.
The psych who helped me at the Cornwall clinic was fantastic, she helped me cope with a difficult family member who was stressing me out to the point I was scared to answer the phone. She also helped me work through some unresolved grief.
She encouraged me to use the wheelchair more to get out to ease my isolation.
She never discussed her views on the nature of ME and at no point did I feel like she was trying to correct 'faulty illness beliefs' and I am pretty good at reading people in real life so I think I would have picked up on any tricksiness.

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!

 

[Jonathan Edwards]

It's here

But it looks as if nobody responded!

 

[Invisible Woman]

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.

 

[Jonathan Edwards]

Since this is not a psychosomatic disease the only people who would find it helpful are either stuck in doublethink or spontaneously (coincidentally) improved.

Yes it did strike me that anyone improving on CBT would realise that they had recovered from not having a disease so would see it was all their fault in the first place and would crawl away and hide under a rock. Except for Susan Blackmore who has green and red hair and doesn't do crawling under rocks.

 

[Liv aka Mrs Sowester]

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.

Yes, this is my experience too.
I have a penpal who claims GET has helped her go from bedridden to wheelchair bound, but I know she was actually taught pacing as we patients know it, then encouraged to increase her daily activity incredibly gently, stopping at every hint of a symptom. We had the same OT.

 

[Alvin]

it did strike me that anyone improving on CBT would realise that they had recovered from not having a disease so would see it was all their fault in the first place and would crawl away and hide under a rock.

You would hope but lots of people claim to be cured by homeopathy, at the other forum people claim to have been cured of ME/CFS from homeopathy, faith healers, snake oils of various kinds and many "therapies".