ME and mine

One of the really BIG problems of having lifelong Myalgic Encephalomyelitis is the misinformation generated widely in societies about chronic fatigue. Nowadays, the popularisation of the dustbin diagnosis of Chronic Fatigue Syndrome (as it was wellknown by in medical circles prior to the formalisation of the CFS strategy) is having devastating negative impacts on people with all kinds of specific medical conditions including cancers, HIV, multiple sclerosis, heart disorders, strokes – you name it and I’d bet you’d find someone denied a true clinical diagnosis and necessary treatment and support services under this bizarre outcome of CFS Strategy misimplementation.

Chronic fatigue is a general population issue and can affect anyone for varying reasons. Post-viral fatigue, similarly. Neither of these conditions of general temporary ill health are ‘a syndrome’. Neither CFS nor PVFS are necessarily M.E. [I experience PVFS as well as my generalised M.E. type health states.]

A smokescreen has been created with very widespread CFS propoganda by swagbaggers and swipesters – even the M.E. charities are forced to play along with furthering the CFS field in order to sustain their funding revenue.

M.E. patients are denied support as a result whilst the general public assume we receive support through CFS implementations. Nobody bothers to go more than two or three clicks to check information enough and so dole out repeated nonsense and assume they know because so-and-so-(web)info-states…

Nobody much reads the entire NICE2007 guidelines to understand the breadth of clinical knowledge, the limitations of NHS provision, the patient expertise and the knowledge of clinical experts. Propoganda still leads us to believe ‘doctors cannot diagnose this’!

The NICE2007 guidelines very clearly state that anyone diagnosed with M.E. or any other lifelong disabling illness cannot be diagnosed with Chronic Fatigue Syndrome. This guidance was due to have been updated in 2014, but I didn’t notice any consultation, nor any news of it, but also haven’t checked yet. There was no such diagnostic label as M.E./C.F.S. in the 2007 guidance but C.F.S/M.E. is diagnosed after an initial Chronic Fatigue Syndrome referral is confirmed as illness with Myalgic Encephalomyelitis.

This is a very complex issue that I didn’t wish to write about here today. To an extent I just have! [Only for interference with my use of my blog that distracted me away from my original post intention!]

It’s incredibly annoying, having a confirmed clinical diagnosis of Myalgic Encephalomyelitis, with devastating lifelong disabling impacts, being expected to meet a class-based stereotype of what my human condition should look like. It’s also annoying when government money intended to help patients is usurped for job-creation schemes for psychological based therapies to the detriment of biomedical research. of course, there are more annoying things, and for us all!

Scientific findings since 1984 have been locked away under the OSA, allegedly – possibly along with my own genetic data from my original severe phase as a teenager and possibly those of other patients.

Books like the one I was reading in the photo that refused to upload to my media library at my other blog, lumping causes of ‘fatigue’ under ’emotional and behavioural problems’, trivialising even general fatigue, and ignoring so many physiological factors, as if you can think yourself out of fatigue states, only adds to those things that can make therapies more harmful for the patient.

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