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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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: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
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.Not sure where I got linked to, but was just flicking through NICE's new document on 'Suspected neurological conditions':
... where reassurance is not enough, and the symptom has a significant impact on everyday life.
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 coinRichard 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.
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.
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).
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.
Are there even any non-awful neurologists in England, in regards to ME patients?
http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/Not heard much yet in my recent exploration of the politics of ME about neurologists
thanks Sly are there any other names to look out for besides Grunewald??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