ME is not a functional disorder: ME Association 13,000+ petition sent to NICE

Sasha

Sasha

Senior Member (Voting Rights)
Charles Shepherd said:
ME is not a functional disorder

ME Association petition has been sent to Sir Andrew Dillon at NICE: M.E. is not a functional disorder | 23 October 2017
The most recent ME Association petition called on NICE to amend its proposed guideline on suspected neurological conditions, and remove all reference to ME/CFS being a functional disorder.

We wrote to Sir Andrew Dillon last Friday, with a covering letter (below) and enclosed the final petition – supported by 13,593 people – along with 199 pages of comments; such was the strength of feeling shown.

Dear Sir Andrew,

…..continued on the MEA website:

http://www.meassociation.org.uk/201...is-not-a-functional-disorder-23-october-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
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Sasha said:
I'm a bit confused - what's the response?
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Andrew Dillon said:
Dear Dr Shepherd

Thanks for your letter dated 19 October 2017 regarding the reference to ME/CFS as an example of a functional disorder in the draft guideline for suspected neurological conditions. You reference the submission to Forward ME Group made in response to the consultation on the draft.

As you aware the guideline group considers and responds to all comments submitted by stakeholders at the draft consulatation stage. The final guideline publication expected in January 2018 will take account of comments made by stakeholders at consultation.

I acknowledge receipt of the petition and the comments that accompany it. I will share them with my colleagues.
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He has to follow the process at this point not going to go public with anything it is the civil service way.

I hope a lot of discussions are going on with his colleagues behind the scenes telling the authors to wake up and smell the coffee. Which - let's face it - he must have done when he overturned the CG53 recommendation.
 
The final guidelines are out: https://www.nice.org.uk/guidance/ng127/resources

Chair of the committee for this was Richard Grunewald, who was on the last NICE CFS committee.

Some bits of interest:

Recurrent episodes of limb weakness, hemiparesis or paraparesis are not uncommon in people with an existing functional neurological disorder; and with other disorders for example, chronic fatigue syndrome and fibromyalgia. The committee considered it inappropriate to refer people with such episodes for investigation after each episode, and considered that psychological support would often be more appropriate than a neurological services re-investigation.
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Recommendation 30–Advice for suspected functional neurological disorders
As functional neurological symptoms usually fluctuate and evolve with time, the committee agreed thatit was important to address the nature of the condition with people with this condition in order to allay concern about the presence of physical illness and to reduce pressure for onward referral for further specialist opinion.
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Recommendations 37–38–Chronic fatigue syndrome, fibromyalgia and functional neurological disorder
Functional symptoms are complaints that are not primarily explained based onphysical or physiological abnormalities. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms, and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically explained illness and cause difficulties in diagnosis and delineation. The committee also considered that people may benefit from an explanation that functional symptoms are commonly accompanied by problems with concentration and memory, and that this may reduce the overall load on clinical services.Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS/ME) and may be present in people with fibromyalgia and functional neurological disorder. People with CFS/ME should be referred according to local pathways (see CG53).The committee considered that a referral for neurological assessment in these cases is not necessary, unless the cognitive difficulties have a significant impact on everyday life. However, this patient population may still need medical or psychological support, depending on the nature of their condition, where reassurance is not enough, and the symptom has a significant impact on everyday life. The committee discussed that access to clinical health psychology can be limited but wanted to point out that, where pain is a prominent accompanying symptom (for example,fibromyalgia or chronic,daily headache), a pain clinic may have appropriate resources.Some patients with functional neurological disorder may benefit from referral for specialist physiotherapy.A recommendation which covered these considerations was thought likely to help GPs to direct these patients to more appropriate channels than neurology services
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Recommendation 29 achieved 58.8% agreement. A suggestion was made to change the wording of ‘functional disorders’ to ‘patient weakness describes may not be explained anatomically’. However, the committee preferred to keep the original wording as it was more concise and they wanted to raise awareness of ‘functional disorders’ and the suggested wording may not be clear enough
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Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities.
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Once again, adding a single word makes all the difference:

Functional symptoms are complaints that are not primarily explained based on known physical or physiological abnormalities.​

I do not believe they are leaving that word out by accident or ignorance. They know it makes all the difference, which is why they avoid phrasing that way.

It is a clear example of the dishonest sophistry that underlies their nonsense.

they wanted to raise awareness of ‘functional disorders’ and the suggested wording may not be clear enough
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A clear admission of their real intent, IMHO.
 
Recommendation 30–Advice for suspected functional neurological disorders
As functional neurological symptoms usually fluctuate and evolve with time, the committee agreed thatit was important to address the nature of the condition with people with this condition in order to allay concern about the presence of physical illness and to reduce pressure for onward referral for further specialist opinion.

So don't worry your little heads about it. That's where the problem would lie, and there is no problem.
 
This reads like a bit of a set back...So if the ME/CFS guidelines end up recommending something completely different, that contradicts these guidelines, how does NICE reconcile the difference? Or can GP’s cherry pick which guideline they want to apply?

Is there a revision process that is quicker than the 2-3 year review process or can the ME/CFS review recommend the re-write of this to exclude the mention of CFS under the remit of clarity to gp’s etc?

This looks decidedly worrying to me.
 
arewenearlythereyet said:
This reads like a bit of a set back...So if the ME/CFS guidelines end up recommending something completely different, that contradicts these guidelines, how does NICE reconcile the difference? Or can GP’s cherry pick which guideline they want to apply?

Is there a revision process that is quicker than the 2-3 year review process or can the ME/CFS review recommend the re-write of this to exclude the mention of CFS under the remit of clarity to gp’s etc?

This looks decidedly worrying to me.
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It does say: 'People with CFS/ME should be referred according to local pathways (see CG53)'. That means the final ME guideline will trump this, and presumably there will be a link to those guidelines.
 
adambeyoncelowe said:
It does say: 'People with CFS/ME should be referred according to local pathways (see CG53)'. That means the final ME guideline will trump this, and presumably there will be a link to those guidelines.
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Thanks for clarifying ...I thought that’s what it meant ...I hope this is something that can be made explicit in the writing of our new guideline.

I presume this will be a topic for discussion? It would be good to challenge the use of the “functional” word to clearly state that it is not currently the belief that there is sufficient evidence that ME has a psychological basis or that this is a so called functional disorder.
 
This extract from above shows how little they understand re moderate or severe ME.

"Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS/ME) and may be present in people with fibromyalgia and functional neurological disorder. People with CFS/ME should be referred according to local pathways (see CG53).The committee considered that a referral for neurological assessment in these cases is not necessary, unless the cognitive difficulties have a significant impact on everyday life."

Trish's poll on the "most limiting symptom of ME" (forget exact wording) on here, had cognitive impairment as the worst symptom for a huge majority.
For my daughter, it is the difference between being able to study A-levels and forgetting what she had been reading the previous day.
Her Maths tutor said "It's like teaching a different person!"
 
MEMarge said:
This extract from above shows how little they understand re moderate or severe ME.

"Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS/ME) and may be present in people with fibromyalgia and functional neurological disorder. People with CFS/ME should be referred according to local pathways (see CG53).The committee considered that a referral for neurological assessment in these cases is not necessary, unless the cognitive difficulties have a significant impact on everyday life."

Trish's poll on the "most limiting symptom of ME" (forget exact wording) on here, had cognitive impairment as the worst symptom for a huge majority.
For my daughter, it is the difference between being able to study A-levels and forgetting what she had been reading the previous day.
Her Maths tutor said "It's like teaching a different person!"
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I’m mild/moderate and cognitive dysfunction is the most limiting part of it... I agree this is just such a bizarre thing to say.

If my only problem was my wife constantly having to jog my memory on everything ...life wouldn’t be too bad.

it’s the wanting to scream at traffic noise, or next doors kids or the constant dizziness/blurring of vision through the day, general confusion (what was I just doing, why can’t I spell or do maths or follow a conversation when I was fine an hour ago?) or to tell my wife and son to talk in series not parallel coz I can’t hear them etc.etc.etc.

I can’t even comprehend what it’s like for the severe end of the scale if being mild is this bad.

They are just ignorant shallow thinkers that don’t feel the need to ever be informed. Well at least we can be assured that going to see a neurologist for a recognised condition is about as useful as seeing a fortune teller anyway (in the main from my n=1 experience)
 
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