Medical Officer for England respond the MEA's petition

[anni66]

Biochemistry must just be too complicated for these people.

 

[NelliePledge]

Not sure where I got linked to, but was just flicking through NICE's new document on 'Suspected neurological conditions':



https://www.nice.org.uk/guidance/GID-CGWAVE0800/documents/draft-guideline

This wording is totally loaded. If they are genuinely saying the conditions covered are suspected of having a neurological basis which the title implies why (ok we all know why) are they then saying in the body of the text that:
1 they don't have any medical basis = well there's all that biomedical research going on but we still think we can ignore it
2 they have an "emotional basis" = well they're all just hysterical
3 they "mimic" neurological symptoms = they're making it up malingerers
4 the "functional" explanation to be given to patients will reduce the overall "load" on the service = bullshit them and they will go away
5 neurological assessment is unlikely to be needed = well they're making it up so why would it
6 If the guidance is on this basis GPs will not refer to neurology = we don't want these people wasting our time with their made up hysterical symptoms

Usual bait and switch of OK let's say "suspected neurological" to cover our backs on WHO classification but actually the text will be all the usual psych rubbish.

Total pile of manure.

 

[Valentijn]

Not sure where I got linked to, but was just flicking through NICE's new document on 'Suspected neurological conditions':

Richard Grunewald, the Guideline Committee Chair, is likely the giant stinky turd in that punch bowl. He has a long history of declaring ME to be completely stress-related, and is funded by a pharmaceutical company to spread the word about psychogenic seizures. I'd expect he's also one of the neurologists blocking a NICE review for ME/CFS.

 

[TiredSam]

... where reassurance is not enough, and the symptom has a significant impact on everyday life.

I think that's all of us, isn't it?

 

[NelliePledge]

Richard Grunewald is likely the giant stinky turd in that punch bowl. He has a long history of declaring ME to be completely stress-related, and is funded by a pharmaceutical company to spread the word about psychogenic seizures. I'd expect he's also one of the neurologists blocking a NICE review.

Not heard much yet in my recent exploration of the politics of ME about neurologists. The psychs get all the starring roles as baddies but only because most of the neuros are so keen to not have to deal with us. But these others who are determined to ignore this illness are just as bad as the psychs. Weaker because scared by their professions lack of knowledge. The Psychs are arrogant in insisting they have knowledge when they clearly don't - two sides of the coin

 

[Valentijn]

For those who are wondering, half of your body going numb or weak is actually an urgent medical problem ... but not in the magical word of psychosomatic quackery:

Recommendation 31 – Recurrent limb weakness Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. 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. Recurrent episodes of limb weakness, hemiparesis or paraparesis are not uncommon in people with an existing functional neurological disorder; and with other functional 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. The committee emphasised that normal and symmetrical tone and deep tendon reflexes significantly reduce the likelihood of an underlying organic disorder. A recommendation which covered these considerations was thought likely to help GP’s to direct these patients to more appropriate channels than neurology services.

Neurological functioning of ME/CFS patients shouldn't be assessed:

37. Do not refer adults for neurological assessment if they have concentration difficulties associated with chronic fatigue syndrome or fibromyalgia. For recommendations on the management of chronic fatigue syndrome see general management strategies after diagnosis in the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy).

Even if they have exactly the same problems where assessment is recommended:

38. Refer adults for specialist (neurological or memory clinic) assessment if they have progressive memory problems or progressive cognitive difficulties that affect several domains, such as language, numerical skills or sequencing of movements, preferably after the problems have been confirmed by a witness and assessed twice in primary care, with an interval of at least a month between the 2 assessments.

I haven't seen any evidence provided for the above claims, and few for the rest of the document (39 references for a 168 page document). This seems to be a bias-based document, not an evidence-based one.

 

[Valentijn]

Stakeholders can register their feedback by 5pm on September 19th. Links and forms are at https://www.nice.org.uk/guidance/indevelopment/gid-cgwave0800/consultation/html-content-2

 

[ukxmrv]

Are there even any non-awful neurologists in England, in regards to ME patients?

Prof Behan for a long time but retired I think

http://www.meassociation.org.uk/2012/02/10372/

Dr Chaudhurhi worked with Dr Behan previously

https://www.ncbi.nlm.nih.gov/pubmed/15043967

Russell Lane (but I've no recent experience )

http://news.bbc.co.uk/1/hi/health/4702515.stm

"Dr Russell Lane, a neurologist at Charing Cross Hospital, in London, said: "This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms, and that CFS is not a 'made-up' illness."

It's not much of a list!

 

[slysaint]

Not heard much yet in my recent exploration of the politics of ME about neurologists

http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/
‘84% of British neurologists don’t view CFS as a neurological illness’ – survey results discussed
from 2011

 

[NelliePledge]

http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/
‘84% of British neurologists don’t view CFS as a neurological illness’ – survey results discussed
from 2011

thanks Sly are there any other names to look out for besides Grunewald??