Wednesday 12 May 2021

International M.E. Awareness Day 2021

Today, 12th May (US May 12th) is International M.E. Awareness Day. In some countries Myalgic Encephalomyelitis (M.E.) is misnamed Chronic Fatigue Syndrome (C.F.S.).

There are three categories of suffering per N.I.C.E.: mild - a loss of 50% of function (what other condition is described as “mild” with a loss of half one’s previous abilities!), but many can still work (G-d knows how!); moderate - mostly house-bound and unable to work; severe - mostly bed-bound. However, the M.E. community is well aware of a fourth category, “very severe”, in which sufferers are mostly blindfolded, earplugged & drip-fed, unable to do anything, not even move (often paralysed), but exist and suffer. Individuals quite literally die from M.E. [The image below is an M.E. taxonomy based on several international criteria - apologies to the sight-impaired, there is far too much text for me to type up.]

I was diagnosed with M.E in 1998. Prior to that I had been diagnosed as having Post-Viral Fatigue Syndrome. Both conditions are classified by the W.H.O. in ICD-10 at G93.3, as neurological conditions (and have been since 1969). Even so, in the U.K., Denmark & the Netherlands especially, where a psychiatric cabal control much of the medical establishment, and in the U.S. until relatively recently, the disease has been treated as a mental-health condition, in contradiction to all the scientific evidence which demonstrates inter alia differences in sufferers’ brains, spinal-columns, hearts, blood-flow, blood-work, biomes, etc.

Recently I have begun to suspect my condition probably commenced at puberty, if not beforehand. Under the current N.I.C.E. guidelines (which are about to be updated) I have been and am classified by my G.P. (family-doctor) and by my N.H.S. hospital-consultant as suffering the severe form. Mostly I am bed-bound, nigh on all the time house-bound. However, with one or two assistants, I am able to travel with lots of planning. This would put me in the moderate grouping. Similarly, there are times when I suffer temporary paralysis, which places me within the very severe grouping. M.E. Is an unpredictable disease that constantly fluctuates. Prior to Severe M.E. Day in August I hope to have conducted some research into my medical history, to attempt to determine the approximate start of my condition, assuming it is not congenital. As long as all goes well, I hope to publish a blog-post on 8th August (August 8th).

[Image Description: the writer in sunglasses and wheelchair enjoying a day out.]

However, for the purposes of my argument today, I am looking at the time-frame 1998-2021. Whilst the numbers of suffers of M.E. is in the tens of millions worldwide, and currently estimated - excluding the new-comers via Covid-19 so-called Long-Covid - to be circa 250,000 - 500,000 in the U.K. That is roughly 1:200 folk having some form of the disease. Every G.P.’s list is estimated to have around forty sufferers. And yet the vast majority of family-doctors know little or nothing about the disease apart from the myths and prejudices, which they (mostly) also perpetuate.

There is NO TREATMENT for M.E.  More than half-a-century has passed since the W.H.O. classified this disease. Until the 21st century very little medical-research was carried out. Even now, most research is funded by sufferers as governments have all but turned a blind-eye to both the disease and especially those who suffer from it. The Pharmaceutical industries have also done very little research (as far as is known), reluctant to invest monies when so little is known about the disease. However, in the past few years the Norwegian Prime Minister apologised to her citizens for their mistreatment by Norway’s health-services. Researchers, especially in the U.S., Australia, the Scandic countries and even the U.K. have been gradually uncovering the secrets of the illness and finding or developing treatments that may help sufferers. Whilst these are still the early-days for same, there is at least some hope.


If the reader knows a person with M.E. (PwME) within their family, friend-group, or community, please do consider volunteering some of your time &/or money to an M.E. Charity.


Apologies for the changes in text-size and alignment - this is not down to me, the writer, but due to issues with Blogger.

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