NICE ME/CFS draft guideline - publication dates and delays 2020

[Jonathan Edwards]

But I don't know if counselling counts as psychotherapy or not.

No, counselling is not psychotherapy. It is providing moral support and practical advice. There is no reason to think it requires a clinical psychologist. I realise that clinicians on the NICE committee may have a slightly different perspective but I can see no reason to include the term CBT in the guidelines anywhere. Talking is only CBT if there is a specific aim to change a belief. We need evidence before anyone thinks they are entitled to do that.

 

[Jonathan Edwards]

f the guidelines are trying to also cover those chronically fatigued patients who do not have the specific symptom of exertion intolerance (as manifested in PEM, however patients describe and experience this) then it isn't going to meet the needs of PWME.

I don't understand why not. It can cover both and include advice on PEM for those that have it. If no specific treatments are to be recommended then there isn't a difference. I see no reason to think there is any more justification for recommending GET or CBT for people without PEM rather than those with.

 

[Hoopoe]

The reason I think CBT is inapproriate is because there's no evidence that there's a particular pattern of dysfunctional thinking that is associated with ME/CFS.

 

[dave30th]

Why should patients with ME be able to access psychotherapy on the NHS if we have no evidence that it is beneficial for such people - period?

I mean whatever provisions are available for people with illnesses to receive supportive therapies, or counseling if that's what one would call it, should apply to ME as it applies to cancer or whatever. I'm not making an argument about what NHS should or shouldn't cover. If they don't cover it for cancer than they shouldn't cover it for ME, and vice versa.

 

[Robert 1973]

I mean whatever provisions are available for people with illnesses to receive supportive therapies, or counseling if that's what one would call it, should apply to ME as it applies to cancer or whatever. I'm not making an argument about what NHS should or shouldn't cover. If they don't cover it for cancer than they shouldn't cover it for ME, and vice versa.

Yes, but wouldn’t it be great if the ME Guideline didn’t just copy the same mistakes that are made with guidelines for other illnesses but actually alerted people to the problems with bad research in therapies for all illnesses – and helped to raise the standards of all guidelines.

 

[Simbindi]

I don't understand why not. It can cover both and include advice on PEM for those that have it. If no specific treatments are to be recommended then there isn't a difference. I see no reason to think there is any more justification for recommending GET or CBT for people without PEM rather than those with.

As someone who has lived with this condition for almost 30 years I would have to disagree. There will be many patients given the diagnosis of 'CFS' and now 'ME/CFS' who have a very different condition than M.E. (a condition for which exertion provokes an increase in/worsening of symptoms, whatever the physiological cause).

Our condition is still a 'waste basket' diagnosis given to patients with chronic fatigue by many doctors, so we need this to stop, otherwise we will continue to get incorporated into the MUS nightmare. Patients given this diagnosis include those who have chronic fatigue as their main symptom or as a consequence of other illnesses (for example, my sister has recently been given a CFS diagnosis because she is chronically fatigued and often bedridden from her fibromyalgia, but her condition is nothing like the M.E. members describe on this forum). Some of these patients will actually have deconditioning that could benefit from increasing activity. The history of the community shows the problems with this and some patients recovery through exercise is used to gaslight PWME as well as to divide us.

I have never needed medical advice to manage PEM, but I do need people like my GP to recognise the phenomenon as a defining feature of my illness (just repeatedly explaining this to her doesn't work) and that even the most minimal exertion provokes a worsening of all my symptoms. I need her to stop thinking my main symptom is chronic fatigue.

 

[Simbindi]

My M.E. was far better understood by my GPs prior to the introduction of 2007 NHS guidelines (my original GP was able to recognise the ignorance of the hospital consultant who diagnosed me in 1993)! So if the revised guideline does not undo the damage from the previous one than I won't consider it sufficient to meet the needs of PWME.

 

[Jonathan Edwards]

I mean whatever provisions are available for people with illnesses to receive supportive therapies, or counseling if that's what one would call it, should apply to ME as it applies to cancer or whatever. I'm not making an argument about what NHS should or shouldn't cover. If they don't cover it for cancer than they shouldn't cover it for ME, and vice versa.

Yes, but that sweeps everything under the carpet, as Robert points out.
NICE is about what the NHS should provide, based on evidence.
If we allow that a therapy is used on any old disease we have exactly the case Lynne Turner Stokes is making for rehabilitation exercises for Long Covid - it works for stroke so we should give it for Long Covid. Follow that route and you get any amount of garbage.

The distinction between supportive therapies and counselling is not just semantics. It is the whole business. Counselling is not a therapy. It is giving human support. It does not need evidence. One could start questioning even that but at some point we have to accept that we know what being kind is.

And when CBT is used for people with cancer I strongly suspect that it is directed at people who genuinely have counterproductive beliefs. My wife developed cancer symptoms on our honeymoon. She and I developed lots of unhelpful beliefs. By and large we navigated ourselves out of them over the years but it might have been good to have help with some specific thoughts she had. Or it might not if the recommended change in thinking was worse.

The critical issue is that calling it CBT legitimises the myth that clinical psychologists somehow have some special expertise in helping people. Everything I see suggests that they are the least qualified to help. They put theory before experience.

 

[Amw66]

The reason I think CBT is inapproriate is because there's no evidence that there's a particular pattern of dysfunctional thinking that is associated with ME/CFS.

This

 

[Tom Kindlon]

The Cochrane link doesn't work for me. One thing confuses me:

The study found that following the intervention, patients with MS reported significantly lower (i.e. better) scores on the Chalder Fatigue Scale (0‐33 scoring) than those in a healthy, nonfatigued comparison group! This significant difference was maintained at 3 and 6 months’ follow‐up. It is difficult to believe that patients with MS fatigue (at baseline) truly subsequently had less fatigue than healthy nonfatigued controls: a much more likely scenario is that undertaking the intervention had led to response biases.

If the above is with reference to the Chalder MS study you linked to, then the control group is not of healthy patients. Seems to be saying it is from the same recruitment of MS patients, but receiving Relaxation Training, so that both groups received similar attention from therapists. Can only see abstract but that's what it seems to be.

There was also a healthy comparison group as the full text makes clear:

To define clinically significant improvement in fatigue, a normative approach was used (27), which assessed whether patients’ fatigue levels after treatment were equivalent to fatigue levels in healthy people. In order to do this, we collected Fatigue Scale data from a matched healthy comparison group recruited during baseline assessments. The 72 MS participants were matched to 72 healthy participants by age, gender, and ethnicity. Healthy participants were screened via interview to exclude the presence of an existing chronic mental or physical illness. The details of these data are presented in the Results section.

 

[Esther12]

yes. The statement :
"
BACME does not support the deconditioning model of ME/CFS as a primary cause for the
condition."
should have read
"
BACME does not no longer supports the deconditioning model of ME/CFS as a primary cause for the
condition."
but even then "a primary cause" is open to interpretation.

The 'primary cause' bit is vital imo.

Has anyone from BACME ever stated that the deconditioning model reveals the primary cause of ME/CFS? I don't see their new statement as being much of a change, other than on the PR front. It's still useful for showing where they think the PR battles are going to be.

 

[Wonko]

I'm fairly sure that they have never said deconditioning is the primary cause.

What they say is that its a perpetuating factor, that continues disability once yhe primary cause has resolved.

 

[dave30th]

The 'primary cause' bit is vital imo.

Has anyone from BACME ever stated that the deconditioning model reveals the primary cause of ME/CFS? I don't see their new statement as being much of a change, other than on the PR front. It's still useful for showing where they think the PR battles are going to be.

They supported the CBT/GET model and referred people to PACE, so they supported the deconditioning framework

 

[Saz94]

Friend of friend who is a trained counsellor, complains that she is only ever asked by referring doctor to "do CBT", not select the type of therapy that she deems most appropriate for the patient's actual situation!

I guess this is cheaper generally for NHS as they can churn out CBT therapists, with minimal training.

CBT seems to imply that if you can change your thoughts about a problem, then all will be fine. So. if you are not fine it is your fault!

Maybe it's because it's cheaper for the NHS... or maybe it's more sinister. A focus on psychological aspects of mental health problems, like "you need to change the way you think", directs attention away from social/political problems that may be causing people depression and anxiety.

IMO, a national body should not be able to mandate that certain people need their thoughts and beliefs changing.

I like how American psychologist and journalist Gary Greenberg puts it --->

..... (he is) critical of cognitive behavioural therapy, which he calls “a method of indoctrination into the pieties of American optimism, an ideology as much as a medical treatment.”

^^^ Exactly.

 

[Saz94]

With all the posturing currently going on and attempts to rewrite history/delete 'the evidence' by various groups/people, a simple admission that they 'got it wrong' is unlikely to be forthcoming.

"The past was alterable. The past had never been altered. Oceania was at war with Eastasia. Oceania had always been at war with Eastasia." (Orwell, 1984)

 

[Esther12]

They supported the CBT/GET model and referred people to PACE, so they supported the deconditioning framework

But referring people to PACE and GET that was built upon a deconditioning model could just indicate that they thought/think that this would "optimise the potential for recovery" (as the new document puts it), rather than because they thought that deconditioning had been shown to be the primary cause of ME/CFS.

PACE doesn't assert that deconditioning is the primary cause of ME/CFS. That CBT and GET in PACE were founded upon different models, yet the researchers were promoting both, shows that their approach to rehabilitating CFS was pragmatic rather than founded on confidence that either of their models provided a full explanation of symptoms. Even before the PACE results were out it seemed that BPS researchers had come to recognise that the deconditioning model wasn't that good at explaining symptoms, but they still seemed to think that it was acceptable to use it simply as a way of 'assisting' rehabilitation. To me, it seemed like they were largely using it as a story to help encourage patients to do what they wanted. They were always ready to jettison it imo.

BACME now says:

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model. A deconditioning based approach would involve an inflexible, structured approach where regular increases in activity are encouraged regardless of how the patient is responding.

Who describes their GET as inflexible, and as something that takes no regard of how the patient is responding?

The move away from the deconditioning model as a way of promoting GET is of some significance, but it doesn't need to lead to much change in the way patients are treated. They can easily find some new story to promote Graded Activity Therapy ("dysregulation principles"?).

 

[dave30th]

PACE doesn't assert that deconditioning is the primary cause of ME/CFS. That CBT and GET in PACE were founded upon different models, yet the researchers were promoting both, shows that their approach to rehabilitating CFS was pragmatic rather than founded on confidence that either of their models provided a full explanation of symptoms.

I disagree. They state explicitly that their advice is based on the principles/approach formalized in PACE. The approaches are essentially both combined CBT/GET, with one side focusing more on the CBT side and one side focusing on the GET side. They're based on one model of unhelpful beliefs and deconditioning, which interact and exacerbate each other. The descriptions of both make clear that reversal is possible because the interventions address the underlying problems.

 

[Jonathan Edwards]

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline.

It does not look to me like any real change in policy. They may have used a model involving reconditioning but the get out clause that reconditioning is not the primary cause has been around for years now.

I see this as a bid to ensure that 'ME/CFS specialist clinicians' get job protection and are allowed to go on coercing people to increase activity.

 

[dave30th]

I see this as a bid to ensure that 'ME/CFS specialist clinicians' get job protection and are allowed to go on coercing people to increase activity.

pretty much, yeah.

 

[Esther12]

I disagree. They state explicitly that their advice is based on the principles/approach formalized in PACE. The approaches are essentially both combined CBT/GET, with one side focusing more on the CBT side and one side focusing on the GET side. They're based on one model of unhelpful beliefs and deconditioning, which interact and exacerbate each other. The descriptions of both make clear that reversal is possible because the interventions address the underlying problems.

I guess that the CBT/GET models are sufficiently complementary that this was a weak point - I still think that it is another indication that they were not fixed to one particular model as a 'true' explanation of CFS.

By their standards, I don't think that jettisoning a particular model and replacing it with a new worthless one need causes them particular problems, but perhaps their standards are increasingly difficult to openly defended. Arguing that the deconditioning model was used as a way of managing patients and promoting GET, without a belief that the model was a valid explanation of patient's symptoms, will hopefully be viewed less generously now than it would have been in the past. I still expect that lots of people within British medicine will be sympathetic and want to help them downplay the problems with their approach though.