NICE remove M.E. from neurological listings (UK)

[Cheshire]

I would add that NICE has told us that they do not classify diseases - that is the job of WHO.

The NICE website listing is purely for access purposes

For uncontroversial diseases, I guess it does not matter very much under which category they are.
But for ME/CFS, it really is important it gets a non ambigous classification (ie non psychiatric)

 

[Sasha]

I do not have a strong feeling about what heading ME should come under. Lupus comes under rheumatology in practice, despite not being particularly rheumatological. Sarcoidosis is about as 'orphan' as ME. I don't think doctors take any notice of what section NICE puts anything under in fact. Whether it has implications in other respects I am not sure. To change the care provision we need some solid evidence for effective treatment I think.

When my GP was refusing to give me a swine flu shot some years ago because ME wasn't on the priority list, I told him that it was a neuro-immune disorder according to the WHO and that, since people with neurological disorders were on the priority list, so should I be (especially since the last time I got something flu-like, it rendered my bedbound for a decade and has still ruined my health 30 years later).

He was very surprised to hear about that categorisation and immediately agreed to let me have the shot.

I think it's important to remember that GPs seem to be getting fed a lot of stuff by the NHS, who in turn are getting fed a lot of stuff by the BPS school. On the last survey, about 50% of GPs didn't think that ME was real. It really matters that a prestigious organisation like the WHO categorise ME as an organic disease - my experience suggested to me that at least for my GP, he was influenced by this.

I wonder if this is one of those things that might be different at GP and consultant level.

 

[worldbackwards]

I would add that NICE has told us that they do not classify diseases - that is the job of WHO.

The NICE website listing is purely for access purposes

They are doing a remarkably good job of throwing their oar into something that they supposedly don't do.

 

[NK17]

@charles shepherd, @Jonathan Edwards, @Sasha and everybody else here interested on this very delicate and critical matter, I'd like to draw your attention to a part of the speech that Prof./Dr. Olav Mella gave this past May on the occasion of the screening of the Norwegian ME documentary "Perversely Dark".

Olav Mella spoke about the Rituximab study and ME/Cfs future on 5 May, 2014 in Oslo:

"Eventually it will become necessary to point out a medical specialty so that one group of doctors will have the responsibility for the care of ME patients. This is still a bit difficult to point out at the moment, but when we'll know the underlying molecular mechanisms, then a medical specialty will take care of PWME. Today patient with ME have to go from doctor to doctor, each one in a different specialty and most doctors don't know the disease and some don't believe in the existence of the illness yet."

Prof. Mella continues by saying:

"I think that if we uncover the mechanisms underlying the pathophysiology of ME, where the immune system most likely plays an important role (my bolding), then the discovery will lead us to the understanding of other diseases such as fibromyalgia."

Right after Dr. Mella adds:

"What I foremost want to bring to you today is hope - REALISTIC HOPE - hope for a better future for ME patients."

Maybe we should have NICE, the NHS etc etc to listen to or read Dr. Mella's speech, ten minutes are going to be enough to do that. For the opening of the minds and some true de-programming of the bureaucratic mind, I'm afraid much more time is needed .

I personally don't have time left to waste on any more shenanigans. If there is one thing that having ME for 3 decades has taught me, is to read between the lines, observe people and understand who are PWME friends and who are foes.

PWME deserve respect, honesty and care which they rarely ever had and realistic hope, like the one that Mella, Fluge, Montoya, Kogelnik, Peterson and many others (@Jonathan Edwards included) are bringing and will hopefully continue to bring. Most of the rest belong to the category of background noise which unfortunately has been taking the front stage for far too long.

My sincere hope is that the background noises will join the biomedical researchers and that they'll do this in a timely manner.

 

[Min]

Maybe they will create a new category especially for us:

"neurological illness that many doctors like to treat with neglect, contempt and abuse".

 

[Esther12]

I would add that NICE has told us that they do not classify diseases - that is the job of WHO.

The NICE website listing is purely for access purposes

But within that listing it does still classify illnesses. Otherwise, this discussion couldn't be taking place.

Given the history and ongoing problems around ME and CFS anything 'multidisciplinary' is unfortunately likely to play in to biopsychosocial quackery imo. If it were not for this history and these problems I wouldn't care how ME and CFS were listed, but as it is, any move away from neurology is unlikely to be helpful imo.

Also, re that paper: I was left thinking that, given the poor level understanding and evidence around ME/CFS at the moment, the discipline most likely to see ME/CFS as 'theirs' is also likely to be the profession with the lowest standards for themselves. I certainly understand why neurologists are currently not keen to take responsibility to ME/CFS, and I expect homeopaths and psychiatrist would be happier to do so - that doesn't seem to me to be an important point or something that should affect how NICE lists their guidelines.

 

[A.B.]

Which specialty is most willing to treat ME/CFS? It seems that most biomedical specialists approach it from an infectious disease angle. Does ME/CFS have a chance at this category?

In any way, I'm not surprised neurologists want nothing to do with ME/CFS. They're strong believers in psychogenic illness, right after psychiatrists. Since the brain is so mysterious there are still so many things not understood, and therefore, great need for psychogenic explanations to avoid embarrassment.

 

[Snowdrop]

Suggestion

New NICE guideline classification: physical illnesses previously considered thought disorders.
That ought to distract them for a while as they compile their list.
And maybe check it twice. Just so they don't miss anything.

 

[NK17]

Which specialty is most willing to treat ME/CFS? It seems that most biomedical specialists approach it from an infectious disease angle. Does ME/CFS have a chance at this category?

I personally see 3 equally important specialty, plus a 4 specialty which is starting to flourish:

- Immunology
- Neurology
with great overlaps which bring us to neuro-immunology
- rheumatology
and
- genetics with all its sub-branches of -omics

 

[A.B.]

New NICE guideline classification: physical illnesses previously considered thought disorders.
That ought to distract them for a while as they compile their list.

Why, is the mental health section so large?

 

[Strawberry]

Why, is the mental health section so large?

Because they have very large egos that need filling.

 

[Valentijn]

My bet would be that it ends up under something like "Unexplained Somatic Disorders". Basically a nice and vague way to strongly imply that they think it's psychosomatic, without using any words that the general public would be too offended by.

And then they could throw in FM, GWS, IBS, unexplained back pain, etc, in typical BPS style.

 

[Esther12]

I think it would be fair to use any change as another reason to push for condemnation from NICE of the way the benefits from CBT/GET have been routinely exaggerated, and for them to reaffirm the importance of informed consent and speaking honestly to patients with ME/CFS.

 

[CantThink]

Neurologists have an exceptionally poor track record of judging what is and what is not a neurological condition. Not too long ago they believed MS was a psychiatric disorder. I don't see why their current opinion of ME should be taken as gospel. I've never met creatures as arrogant and intransigent as consultants in neurology. Would a bit of self-awareness and historical reflection really hurt the egos that much?

Endocrinologists are not much better - speaking from having met quite a lot of them and heard many other people's experiences.

I was reading an epilepsy forum the other day, and it was interesting to note how many people attempting to get a diagnosis of symptoms and events suggested of seizures were dismissed by neurologists as either anxiety or psychogenic - a high proportion of these cases seemed to be female. Some of them later were correctly diagnosed with epilepsy but others were in the limbo many of us with M.E. seem to face. It astounds me.

 

[Kati]

How NICE classifies this disease is not just a UK thing and is not benign. NICE guidelines are currently being reviewed by the IOM and by the P2P, 2 processes which are happening in the US which will have a repercussion on all patients with ME around the world.

And indirectly it would explain why there is this mention in a consultation report from earlier this year

Unfortunately with this type of patient, one of the worst things we can do is to continue to look for underlying biological causes with multiple testing, therefore re-enforcing to the patient that she has a biological disease and that it should be continually sought for/

 

[Cheshire]

How NICE classifies this disease is not just a UK thing and is not benign. NICE guidelines are currently being reviewed by the IOM and by the P2P, 2 processes which are happening in the US which will have a repercussion on all patients with ME around the world.

And indirectly it would explain why there is this mention in a consultation report from earlier this year

Yes, things are all connected. In France, as there is no official position about ME/CFS, CDC and NICE guidelines are often used as references.

 

[Min]

Esther - I understand that NICE intend to place ME/CFS under a 'neutral heading' as ME/CFS (or CFS or CFS/ME). This will take some time to organise. At the moment I suggest that people leave further contact with NICE on this matter with the Countess of Mar and the Forward ME Group. I don't think letters to NICE from people with ME/CFS will help at this stage, and if some people write angry letters to NICE it could even be counter-productive.

The problem with leaving it in the hands of Forward ME is that the MEA represent something called 'myalgic ENCEPHALOPATHY', they do not represent myalgic encephalomyelitis; the former has no WHO classification code.

Another problem is that AfME are so very closely linked to the Wessely school of psychiatry that they may agree, secretly or not, with a reclassification to a psychiatric disorder.

I am sure Lady Mar and the other charities involved will do their best.

 

[charles shepherd]

The problem with leaving it in the hands of Forward ME is that the MEA represent something called 'myalgic ENCEPHALOPATHY', they do not represent myalgic encephalomyelitis; the former has no WHO classification code.

Another problem is that AfME are so very closely linked to the Wessely school of psychiatry that they may agree, secretly or not, with a reclassification to a psychiatric disorder.

I am sure Lady Mar and the other charities involved will do their best.

Min

I know you don't like the MEA but the fact that I have advocated the use of the term myalgic encephalopathy has nothing whatsoever to do with what is happening at NICE and our position does not create any form of problem in relation to where NICE decide to place ME/CFS on their website

The MEA is playing a very active role within the Forward ME Group in trying to not only get a new NICE guideline in place but also in trying to get ME/CFS indexed to a suitable place on the NICE website if we are not going to be able to persuade them to use the neurological section

I also don't think you appreciate all the peripheral work that 'goes on behind the scenes' at the Forward ME Group - not only in relation to a number of issues relating to NICE at the moment but some of the other actions I/we are involved with in relation to obtaining proper recognition of ME/CFS as a complex multi system neuroimmune disease.

This week, this has also included writing to the editors of a very well known medical textbook with a long critique of the entry on ME/CFS - but that doesn't receive any publicity.

 

[Jonathan Edwards]

I have had a look at the NICE disease 'listing for access purposes'. It seems to me to be just that. It is not divided up by speciality or by organ system or by anything very systematic. It is all a bit of a muddle and I cannot believe that anybody medical is going to take any notice of where something is on this list. I realise it matters elsewhere but I think this is a storm in a teacup. I tried to look for sarcoidosis, which would not fit easily into any speciality, and I cannot even find anything at all. So maybe it is good that ME//CFS is at least thought real enough to mention by NICE.

And if people are critical of the current guidelines, which seems to me very justified, then maybe the fact that they no longer appear under any heading is a good thing!

If we want consistency then I guess it would be reasonable to have ME under a 'multisystem' category or a 'neutral' category. I haven't really been following this but it sounds as if at least it has been taken out of a psychiatric category, which is probably all that needs to be ensured.

 

[Min]

The fact remains that myalgic encephalopathy does not have a WHO classification.