NICE ME/CFS guideline - draft published for consultation - 10th November 2020

[Simbindi]

I don't understand why people who are not depressed or don't have a mental illness should be told to deny they aren't depressed or don't have a mental illness. To me, that feels like we are being led to gaslighting ourselves and to deny our own lived reality and the experience of our own bodies. Any low mood I have felt because of my physical illness has come from people not believing how physically ill I am and the lack of practical and financial support.

 

[Peter T]

Absolutely. Specific criticism of CBT/GET including sharing personal stories of the harm it has done is definitely most effective.

Our message should be 'CBT/GET is harmful' rather than 'ME is a physical disease'.

I think it is permissible to argue, that the fact the aetiology of ME is not understood is not a justification for using psychological and behavioural interventions to try to cure the condition itself, rather than supporting patients in a situation where we have no evidence based treatments. Ignorance is not justification for imposing a treatment, where as it is justification for rejecting it.

Also is it rational to try out without any meaningful evidence presumed psychological cures, when we have no evidence of psychological abnormalities in ME, and at the same time to ignore most of the condition’s symptoms beyond fatigue and to ignore the many studies indicating physiological anomalies.

The supporters of curative CBT and GET are accusing us of rejecting their approach because we dislike their unevidenced psychogenic theories but they are just as guilty of ignoring reports of harm, the lived experience of their patients and thousands of other research papers because of their own personal beliefs.

 

[Simbindi]

And by some people with ME, including the ones quoted in the article who emphasised that ME is a physical disease. I think their points about GET were much stronger when the stuck to the harm it had done for them, rather than on the basis of wrong theory.

But surely if GET has harmed you then this is proof of physical disease?

 

[Snow Leopard]

Our message should be 'CBT/GET is harmful' rather than 'ME is a physical disease'.

Yes, the primary argument is GET is harmful and ineffective. The 'ME is a physical disease' is merely a secondary corollary from the fact that neither cognitive behavioural therapies nor psychoactive medication is effective.

Patients do need to be clearer with our arguments, because 'ME is a physical disease' can be hand-waved away with arguments about mind-body duality and mental health stigma that should otherwise be considered irrelevant arguments.

 

[Peter T]

But surely if GET has harmed you then this is proof of physical disease?

It is suggestive of an underlying biomedical condition, but not proof.

People who believe they can fly without mechanical aids (eg aeroplanes) may have lots of broken legs, which is a biomedical consequence, though presumably a psychological diagnosis remains the most important one.

(Added - Though equally one’s only thought on seeing repeated broken legs should not be the patient is mentally ill. And an underlying psychiatric diagnosis is not justification for not treating the broken leg.)

 

[Simbindi]

It is suggestive of an underlying biomedical condition, but not proof.

People who believe they can fly without mechanical aids (eg aeroplanes) may have lots of broken legs, which is a biomedical consequence, though presumably a psychological diagnosis remains the most important one.

(Added - Though equally one’s only thought on seeing repeated broken legs should not be the patient is mentally ill. And an underlying psychiatric diagnosis is not justification for not treating the broken leg.)

But exercise, or at the very least 'normal activity' is essential for human life. The only reason I am alive is because I am financially supported in a modern society (I would not for example, be able to move to seek food without severe PEM). So GET is not asking people to do things that the normal healthy human body is not capable of, yet it causes us physical harm. I think this does give proof of physiological abnormality in our bodies.

 

[Simbindi]

Yes, the primary argument is GET is harmful and ineffective. The 'ME is a physical disease' is merely a secondary corollary from the fact that neither cognitive behavioural therapies nor psychoactive medication is effective.

Patients do need to be clearer with our arguments, because 'ME is a physical disease' can be hand-waved away with arguments about mind-body duality and mental health stigma that should otherwise be considered irrelevant arguments.

I think it is easy to fall into a trap that we are just dealing with BPS professionals, whereas in our daily lives we are dealing with family, friends, neighbours, and (if mild) work colleagues. Most of these people do not think like BPS professionals, nor use complex arguments about 'mind-body' duality. So when PWME want to state that they do not have a mental illness, that they are physically ill, this is actually very important for them in terms of how family, friends, neighbours, colleagues and the public perceive their illness.

 

[MSEsperanza]

I'm not from the UK haven't been involved in any preparation for the final NICE guideline release but I do hope that UK patient organizations are preparing for the ensuing debate in the media.

I hope they are contacting scientists like Brian Hughes, David Tuller, Jonathan Edwards, Caroline Wilshire, and others to prepare comments on the guideline in advance.

I also hope that people are working on that already. Anyway, these are some questions that I likely would have asked if I were a journalist or an other observer new to the topic:

1) Was the evaluation of the benefits of treatment options done equally sound as before and as it is done with other guidelines?

2) How can it be explained that systematic reviews on the benefits of similar treatments for fatigue associated with other illnesses suggest they are effective?

3) In which way did patients influence the assessment of the quality of evidence?

4) Which role did the potential harm of treatment options in the evaluation of the evidence base play?[*]

I'm sorry that I am not able to work on substantiating accurate and short answers to these questions.

From following the process on the forum I'm sure though that the accurate answers will leave no doubt that both with regard to a scientific approach and to patient involvement, the review process of the new guideline was done properly, and probably even better than in the development of most other guidelines.

In addition, even though the simplest answer on question 2) seems to be that ME/CFS is a distinct illness and there is no evidence that fatigue e.g. in MS, RA or Cancer is similar to symptoms experienced by pwME -- maybe there is something that could be learned from the update on this NICE guideline about the difficulties of assessing the evidence delivered by clinical trials on non-pharmacological treatments in general.

[*] I think the point about potential harms could include a short explanation on or reference to why, generally, the evidence of harm is evaluated with different criteria than the evaluation of benefits. In addition, there is the issue with an apparent lack of ensuring the report of harms from non-pharmacological treatments, see:

Struthers, C., It is not only drugs and devices that can harm, HealthWatchUK, 2021, https://www.healthwatch-uk.org/publications/newsletter/newsletter-114/221-114-cbt-get.html

 

[CRG]

"Events, my dear boy, events"*

Given the release date is mid August when half the UK media is on holiday and we are in what is traditionally the 'silly season' where media content is even more than usually filled with trivia, we could have expected the Guidelines to get a good deal of media attention. However it's likely TV and newspaper headlines are going to be taken up with grim news elsewhere, so the release on Wednesday could get a very quiet reception. This, from the patient perspective might not be too disadvantageous as it likely disproportionately removes oxygen from any anti patient perspective voices.

*quote attributed to then Prime Minister Harold MacMillan in answer to the question "What, if anything, worries you, Mr Macmillan?”

 

[Simbindi]

Yes, the primary argument is GET is harmful and ineffective. The 'ME is a physical disease' is merely a secondary corollary from the fact that neither cognitive behavioural therapies nor psychoactive medication is effective.

Patients do need to be clearer with our arguments, because 'ME is a physical disease' can be hand-waved away with arguments about mind-body duality and mental health stigma that should otherwise be considered irrelevant arguments.

I do agree we need to be careful with our arguments in the context of dealing with the BPS brigade and when writing to journals, but I think we need to understand the frustrations of the average patient with regards to how they need other people to frame their illness as a physical disease.

For example, in the UK, if you are considered to have a mental health problem or illness, you would be 'sign-posted' to MIND, our largest mental health charity. We need to ask if this is appropriate for ME/CFS as the primary health condition (rather than for any additional emotional support required).

https://www.mind.org.uk/information-support/types-of-mental-health-problems/

 

[Snow Leopard]

For example, in the UK, if you are considered to have a mental health problem or illness, you would be 'sign-posted' to MIND, our largest mental health charity. We need to ask if this is appropriate for ME/CFS as the primary health condition (rather than for any additional emotional support required).

Isn't that an an example of a secondary argument - that patients will only be offered irrelevant/ineffective treatments?

 

[Simbindi]

Isn't that an an example of a secondary argument - that patients will only be offered irrelevant/ineffective treatments?

I am not talking about 'arguments' but what happens in actual practice to actual patients. I am not sure what you mean by primary and secondary arguments in this context. Most PWME go through their lives without engaging in the type of discussions we have here on the forum. What matters to them is what happens in the context of their daily lives.

 

[Barry]

There's a comment in the comment section of this article that says,:

"Genuine question, not an opinion.

In the abscence of any consistent physiological cause of ME, as opposed to the undoubted physiological affects, why are ME sufferers so adamant that there is not a mental illness aspect to their condition?

Mental illness is not a cause for shame and it doesn't mean the answer is " to pull yourself together"."

I think this is a common misunderstanding and, tbh, I can see why people with no experience of ME might jump to this conclusion - particularly given that it is a narrative that has been encouraged by high profile psychs.

I agree with you. There was a time I had the same misunderstanding, especially when espoused by such prominent scientists. It is not until you have personal understanding the non-applicability of the deconditioning theory, and the attendant theories around false illness beliefs, that you appreciate just how imbecilic the whole thing is. My wife would have sorted her ME out a long time ago if that were the case.

So I can understand, and I have said in S4ME in the past, that it is very easy for people with no experience of ME to get the wrong end of the stick. The BSP scientists have got it wrong all these years, so others will too.

In fact once we have the release of the new NICE guideline behind us, it might be good to genuinely try to help people like that person to better understand, recognising theirs is a sincere enquiry.

 

[MSEsperanza]

The new NICE Guideline for ME/CFS: Ten Questions Answered - The Science Bit

https://thesciencebit.net/2021/08/15/the-new-nice-guideline-for-me-cfs-ten-questions-answered/

Haven't read it yet but this looks very good.

Thank you, @Brian Hughes.

 

[Simbindi]

In the abscence of any consistent physiological cause of ME, as opposed to the undoubted physiological affects, why are ME sufferers so adamant that there is not a mental illness aspect to their condition?

I think the reason is that ME sufferers know their own thoughts and attitudes to life, that they have a positive outlook on life that is incongruent with clinical depression.

 

[Sly Saint]

The new NICE Guideline for ME/CFS: Ten Questions Answered - The Science Bit

https://thesciencebit.net/2021/08/15/the-new-nice-guideline-for-me-cfs-ten-questions-answered/

Haven't read it yet but this looks very good.

Thank you, @Brian Hughes.

my favourite point
"
8. Is it accurate to refer to CBT and GET as “evidence-based” treatments for ME/CFS?
No."

 

[Barry]

There's a comment in the comment section of this article that says,:

"Genuine question, not an opinion.

In the abscence of any consistent physiological cause of ME, as opposed to the undoubted physiological affects, why are ME sufferers so adamant that there is not a mental illness aspect to their condition?

Mental illness is not a cause for shame and it doesn't mean the answer is " to pull yourself together"."

I have replied to this, in the hope it will help the commenter to better understand.

 

[Snow Leopard]

I am not talking about 'arguments' but what happens in actual practice to actual patients. I am not sure what you mean by primary and secondary arguments in this context. Most PWME go through their lives without engaging in the type of discussions we have here on the forum. What matters to them is what happens in the context of their daily lives.

I'm saying the reason why patients would reject a referral to MIND is because the treatments will be ineffective. This is what a patient would say to a medical practitioner for example, rather than I don't want that referral because "ME is a physical illness".

 

[rvallee]

I think the reason is that ME sufferers know their own thoughts and attitudes to life, that they have a positive outlook on life that is incongruent with clinical depression.

Also because of this:

Same answer for astrological/meteorological/podiatric/otherwisical causes. There is no need to prove this anymore than there is a need to prove that Russel's teapot isn't currently half-roasting in space. There is nothing at all consistent with a psychological anything, only the observer's ignorance being filled with random false attributions.

 

[Simbindi]

I'm saying the reason why patients would reject a referral to MIND is because the treatments will be ineffective. This is what a patient would say to a medical practitioner for example, rather than I don't want that referral because "ME is a physical illness".

I guess this is an individual choice, but I wouldn't state that. I would state I wasn't suffering from a mental health condition. I feel it is very important for health professionals involved in my care to understand and accept my reality (both objective and subjective).

I have autism, which does cause anxiety, but I am easily able to tell what triggers this in myself (now that I understand my autism). I also have had a period of a few years of suffering severe depression where I needed appropriate secondary level mental health support but was denied this by the NHS (fortunately I got it from Rethink under a council funded programme, but only because I was at risk of homelessness - which was one of their criteria for referral to the programme), so I know the difference in how depression and my ME both feels subjectively and impacts on my ability to self-care etc. Although looking back even the severe depression had external triggers (it started before I received my autism diagnosis and was also triggered by financial and social circumstances, which improved once I was formally diagnosed as being autistic).