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

[James Morris-Lent]

Perhaps it is helpful to look at 'comparables' as one does in sports scouting.

In terms of general goal and absolute volume of valid scientific evidence, I would say that CBT's comparables on the open market are:

• Fortunetelling
• Religious Confession
  
• Life-Coaching
• Motivational Speaking
  
• Self-Help Books
• Advice Columns
• 'Twelve-Step'-like programs (Alcoholics Anonymous, e.g.)
  
• Psychoanalysis
• 'Therapy' (whatever mishmash of psychotheories the therapist prefers)
• probably more things

If consenting adults wish to engage with these things, I generally think that that is their business.

But medicine needs to understand that the things on this list that make a pretense to being scientifically-based are, in fact, 'Alternative' therapies at best. Indeed the comparables are by nature some mix of religion, quackery, 'bro-science', and 'folk wisdom' or something.

Quite possibly they should have no relation at all to the medical system unless there proves to be some indication based on reliable evidence.

 

[MEMarge]

Having worked through things with others for a regional guideline in my country, my view is that medical guidelines for ME/CFS should note the debilitating nature of ME/CFS and the resulting need for support.

Here, where there is no specialised care for ME/CFS, the first line of support should be acknowledgement of the difficulty the person and their family is facing, assisting in practical ways (applications for welfare benefits, disabled parking, home help services, ensuring family and employer/school understand) and referring the patient to local and online peer support.

If, after that, the person is depressed or anxious, then treat them as a person coping with a difficult life situation who is depressed and anxious. Follow the guidelines for depression or anxiety disorder, which hopefully include compassionate counselling.

The problem we have here, and I'm sure that we aren't alone, is that we have not identified any psychologists/counsellors who understand ME/CFS. Even if we had, with the free mental health services that don't involve a 6 month or so wait, you can't choose who you see. So, a person with ME/CFS seeing a counsellor is more likely than not to be exposed to unhelpful attitudes and information.

Totally agree re the support. A friend whose son was diagnosed with Non Hodgkins Lymphoma a couple of years into my daughter's illness commented that she was immediately directed to all the finacial and other support available. School were amazing and a wall in their lounge was covered in cards.

For the first few months his life was in the balance and the family were in virtual lockdown due to his very low immunity, but he then improved and sat some GCSE's and got results for others based on teachers' assessments. He was then able to complete A-levels, while having a variety of chemo. So he was at most lessons.
They employed a Maths tutor, but he managed the other subjects and did well. He then had to delay Uni for a year as his treatment continued till the spring and he then needed 6 months clear before being re vaccinated with all the "childhood vaccines".

He finished his degree, has been working for a couple of years and got married in August, which is brilliant.

 

[JemPD]

Honestly if the severity were recognized and emphasized to the point where family would take up most of the slack and nothing else happened, if ME patients actually got support at home in a way that truly gets the severity and the need for this help, about half the total disease burden would vanish entirely, as would most of the suicides. Of course that would require it to be a recognized disability, but that's still cheaper overall when you factor in all costs so not an issue.

This

Don't even need to spend a single dollar of health care budget or provision a single service. Don't even need to do a damn thing more and it would do more to improve quality of life than literally all the misguided efforts so far, 100x over. Of course in addition to competent professional services it would be even better, but it is the continuing discrimination that is itself by far the most significant factor in the horrible quality of life.

True. Dat.

 

[rvallee]

This was posted in another thread but is relevant to the NICE committee here:

Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

https://meassociation.org.uk/2020/1...d-exercise-therapy-in-me-cfs-post-long-covid/

Discussed here:
https://www.s4me.info/threads/the-m...cise-therapy-in-me-cfs-post-long-covid.17297/

Following a review of the evidence behind existing recommendations of GET as a suitable therapeutic treatment for ME/CFS, Health Improvement Scotland’s Health Technologies Group produced a rapid response in August reporting the conflicting reports of effectiveness for GET.

 

[Kalliope]

 

[Andy]

Also note that they have used the #MEAwarenessHour at 2:52 pm on a Friday afternoon. It's nice (pun unintended) that they have tried to be more relevant to the community but getting things like that wrong make them look more out of touch unfortunately.

 

[Keela Too]

Date now corrected:

 

[Trish]

#ME Action UK

6 Ways To Have Your Say In The NICE ME/CFS Guideline Consultation

https://www.meaction.net/2020/10/22...uideline/?mc_cid=03e4d84441&mc_eid=83ddbd3a71

On 10th November 2020 the consultation on the draft ME/CFS guideline will be launched by the National Institute for Health and Care Excellence (NICE).

As a key stakeholder, #MEAction UK will be submitting an extensive response to this, but we need your input to do so. Whether you live with ME, care for someone with ME, or are an ally to the cause, you are welcomed to participate.

A key group of volunteers, many living with ME themselves and others carers of people with ME, make up #MEAction UK’s NICE team, who will be writing the submission. The consultation will be open for 6 weeks, ending on the 22nd December.

 

[Kalliope]

Trial by Error by David Tuller: NICE's Upcoming Draft Guidance on ME/CFS

The 2007 guidance for CFS/ME, concocted by a committee over-weighted with members and supporters of the biopsychosocial ideological brigades, recommended cognitive behavior and graded exercise therapy as the best treatments. When the bogus PACE results were published in 2011, they appeared to bolster the 2007 recommendations. Three years ago, NICE reversed its initial decision to leave the guidance as is after an outpouring of negative public comment. Now the revision process is coming to fruition.

I have no inside information, but I’m going to make a couple of guesses about the draft guidance.

 

[Barry]

If deconditioning is not the problem, then GET is not the solution.

Bullseye!

 

[Sly Saint]

David Tuller:
I could be completely off the mark here. But the recent statement issued by the British Association for CFS/ME, which basically contradicts everything they have argued for years, suggests the CBT/GET ideological brigades are running scared and positioning themselves for the fall-out of a new NICE guidance.

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.

Also, although BACME signed the "trans-national scientific position statement on Myalgic Encephalomyelitis (ME) that underpins the global advocacy led by the International Alliance for ME and affiliated individuals, and national professional organisations."
https://www.s4me.info/threads/iafme...and-respect-an-agenda-for-change-in-m-e.7049/

in 2018, which highlights the flaws of the PACE trial, BACMEs ‘Therapy and Symptom Management Guide’ which included:

specialist CBT and GET
training (recommended by NICE and available at www.PACEtrial.org).

Once a diagnosis has been made, patients should be considered for further evaluation to
see if they would benefit from the evidence based treatments (CBT – cognitive behaviour
therapy and GET – graded exercise therapy).

was only removed sometime after May 2019 (and is still available through various NHS sites).

It will be interesting to see their new version of this ( although I imagine it won't appear until after the publication of the new NICE guidelines).

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.

 

[Robert 1973]

Thank for the blog @dave30th.

You write:

Despite the documented uselessness of CBT for treating the underlying condition, it is harder than with GET to make a case for potential harm. The theoretical framework is the same as that for GET—it is just that the remedial approach taken is psychologically oriented rather than behaviorally oriented. Because patients are theorized as suffering from unhelpful beliefs about having an organic illness, the CBT is designed to alleviate them of these dysfunctional cognitions. And since that cognitive restructuring is combined with admonitions to also increase activity, it creates serious potential for harm, just like GET.

It may be harder to make the case that PACE-type CBT is harmful, but the psychological harms should be obvious to anybody who accepts that ME is not perpetuated by unhelpful beliefs – particularly as CBT is a psychological intervention designed and delivered by people who specialise in mental health.

Whether it is ME, cancer or any other illness, telling patients that they can reverse their illness “by their own efforts” by thinking differently when that is not true is cruel. In many cases CBT may lead to the same physical harms as GET by encouraging patients to push through symptoms in order to try to do more. But even if it doesn’t, we should not overlook the psychological harms of being lied to by therapists who, instead of helping patients come to terms with and manage their illnesses and disabilities, are telling them that their thoughts are preventing them from getting better. Regardless of the physical effects, that is psychological abuse in my view. And psychological abuse is harmful.

 

[dave30th]

It may be harder to make the case that PACE-type CBT is harmful, but the psychological harms should be obvious to anybody who accepts that ME is not perpetuated by unhelpful beliefs – particularly as CBT is a psychological intervention designed and delivered by people who specialise in mental health.

I agree. I was talking about the practicalities. Patients with ME should be able to get psychotherapy like anyone would without having to think they're getting it to "cure" the illness. So I think the committee will try to make that distinction but the language will be key.

 

[Trish]

I agree. I was talking about the practicalities. Patients with ME should be able to get psychotherapy like anyone would without having to think they're getting it to "cure" the illness. So I think the committee will try to make that distinction but the language will be key.

As a comparison, I think it's worth looking at the Multiple sclerosis guidelines:
https://www.nice.org.uk/guidance/cg186/chapter/Recommendations

1.3 Coordination of care
1.3.1Care for people with MS using a coordinated multidisciplinary approach. Involve professionals who can best meet the needs of the person with MS and who have expertise in managing MS including:

• consultant neurologists
  
  
• MS nurses
  
  
• physiotherapists and occupational therapists
  
  
• speech and language therapists, psychologists, dietitians, social care and continence specialists
  
  
• GPs.

Note particularly that there is only minor mention of psychotherapists, suggesting they are not part of the core team. I think the same should apply for ME. They should not have a central place in ME management.

Fatigue
1.5.2Assess and offer treatment to people with MS who have fatigue for anxiety, depression, difficulty in sleeping, and any potential medical problems such as anaemia or thyroid disease.

1.5.3Explain that MS‑related fatigue may be precipitated by heat, overexertion and stress or may be related to the time of day.

1.5.4Offer amantadine to treat fatigue in people with MS.

In October 2014, this was an off-label use of amantadine. See NICE's information on prescribing medicines.

1.5.5Consider mindfulness‑based training, cognitive behavioural therapy or fatigue management for treating MS‑related fatigue.

1.5.6Advise people that aerobic, balance and stretching exercises including yoga may be helpful in treating MS‑related fatigue.

1.5.7Do not use vitamin B12 injections to treat fatigue in people with MS.

1.5.8Consider a comprehensive programme of aerobic and moderate progressive resistance activity combined with cognitive behavioural techniques for fatigue in people with MS with moderately impaired mobility (an EDSS [Expanded Disability Status Scale] score of greater than or equal to 4).
...
1.5.32Be aware that anxiety, depression (see the NICE guideline on depression in adults with a chronic physical health problem), difficulty in sleeping and fatigue can impact on cognitive problems. If a person with MS experiences these symptoms and has problems with memory and cognition, offer them an assessment and treatment.

So here CBT and other psychotherapeutic services are seen as referrals in some cases where a need is perceived for help coping with fatigue and for comorbid anxiety and depression.

It would be interesting to see what research there is to suggest any sort of psychological therapy helps with MS fatigue. I suspect it's as bad as the ME research, but at least it's not seen as a core MS treatment.

 

[Robert 1973]

It would be interesting to see what research there is to suggest any sort of psychological therapy helps with MS fatigue. I suspect it's as bad as the ME research, but at least it's not seen as a core MS treatment.

In one study Chalder and colleagues found that people with MS who had CBT were less fatigued than healthy controls: https://pubmed.ncbi.nlm.nih.gov/18256342/

@Tom Kindlon referenced this study in his response to Cochrane review of exercise:
https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=269706093 [edited to correct the link]

Another study that exemplifies the problem of focusing too much on fatigue scores after behavioural interventions is a study of CBT in multiple sclerosis (MS) patients with “MS fatigue”(16). 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.

 

[Barry]

Thank for the blog @dave30th.

You write:
It may be harder to make the case that PACE-type CBT is harmful, but the psychological harms should be obvious to anybody who accepts that ME is not perpetuated by unhelpful beliefs – particularly as CBT is a psychological intervention designed and delivered by people who specialise in mental health.

Whether it is ME, cancer or any other illness, telling patients that they can reverse their illness “by their own efforts” by thinking differently when that is not true is cruel. In many cases CBT may lead to the same physical harms as GET by encouraging patients to push through symptoms in order to try to do more. But even if it doesn’t, we should not overlook the psychological harms of being lied to by therapists who, instead of helping patients come to terms with and manage their illnesses and disabilities, are telling them that their thoughts are preventing them from getting better. Regardless of the physical effects, that is psychological abuse in my view. And psychological abuse is harmful.

Yes! Being as there is so much interest in psychological implications for ME/CFS, it's about time the psychological trauma of being maligned and mistreated, year in year out, by the very profession supposed to help you, was taken into account.

This not a trivial issue. What would be the consequences of medical professionals telling cancer patients that, although they may have had initial triggers for their illness, it was now only perpetuated by the patients' own unhelpful beliefs! How would that play out in the courtrooms for medical malpractice cases?

 

[Barry]

In one study Chalder and colleagues found that people with MS who had CBT were less fatigued than healthy controls: https://pubmed.ncbi.nlm.nih.gov/18256342/

@Tom Kindlon referenced this study in his response to Cochrane review of exercise:
https://www.cochranelibrary.com/cds....pub7/detailed-comment/en?messageId=160462684

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.

 

[Jonathan Edwards]

Patients with ME should be able to get psychotherapy like anyone would without having to think they're getting it to "cure" the illness.

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? And quite likely no reliable evidence for any people.

Moral support is part of being human but I see no reason to call it psychotherapy.

 

[Barry]

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? And quite likely no reliable evidence for any people.

Moral support is part of being human but I see no reason to call it psychotherapy.

A good friend and colleague died a few years ago from cancer, but before he got really ill and was still able to work, he told me the counselling sessions he and his wife both had were incredibly helpful for them both. But I don't know if counselling counts as psychotherapy or not.

 

[Simbindi]

It would be interesting to see what research there is to suggest any sort of psychological therapy helps with MS fatigue. I suspect it's as bad as the ME research, but at least it's not seen as a core MS treatment.

I can foresee problems if the revised NICE guidelines continue to cite chronic fatigue as the core, defining symptom of 'ME/CFS', rather than PEM. If 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.