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.

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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.

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

International M.E. Awareness Day 2020

I have not been well enough at this time of the year since 2017, so this is my first blog-post to mark the international Myalgic Encephalomyelitis awareness day in three years. (Underneath this blog-post is a list of words and terms, click on any of the ones referring to M.E. to find some of my previous outpourings.)

Under the UK’s current N.I.C.E. Guidelines and by my NHS hospital specialist, I am classified as having the severe form of M.E. There are three official categories: mild, moderate, & severe. However, the severe category itself covers a range of folk from those who are mostly bed-bound, like myself, to those who cannot ingest food or water and have to be kept alive via feeds.

In my previous blog-post I wrote:

“M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.”

I have mulled over the possible threat to my privacy and so forth, but have decided to publish the full list of my conditions. Obviously I have had to hide certain personal details to prevent identity-theft. I am not publishing this list to garner sympathy. My hope is that the reader will come to realise just how ghastly this disease is in its depth and breadth of conditions and symptoms. Many of these are covered in the broad and all-enveloping rubric of the term Myalgic Encephalomyelitis, many are classed as co-morbidities; but which is which is very much still debated.

The list below has not been updated since 2016. However, since that time my medications have altered. I have left the original medicines listed so one has a sense of what is or, in most instances, is not available.

The European Parliament recently unanimously voted for more funding for research into the biological causes of M.E., because despite millions suffering across Europe (and indeed the World), very little is invested into medical research. Individuals with the worst form of M.E. have worse quality of life scores than any other measured illness, including cancers and AIDs. Because we are hidden in our homes, we are ignored or dismissed. Please consider donating time or money to a Myalgic Encephalomyelitis charity or research proposal.

My Myalgic Encephalomyelitis - My M.E.

Whilst my arthritides have been better this year, due to the unusual warmer, drier weather we have experienced, the Myalgic Encephalomyelitis has been its typical pain-in-the-derrière.

Apparently, for the first time I attended the annual choral Saint Nicholas concert on my own two pins rather than in my wheelchair. And I even managed to send Christmas-cards too - and prior to the actual holidays!

But all too often I have been trapped abed, unable to experience Life. I have it fortunate, for although my condition is considered “severe”, I am not in the most severe category.

The worst 25% of severe are: trapped abed always; eyes covered in blind-folds; ears covered in noise-cancelling head-phones; drip-fed; and, unable to be touched.

M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.

[Image description: woman in black, sitting on a park-bench, looking out at a frozen landscape. It reads:

HAVING M.E. IS LIKE SITTING ALONE ON A BENCH WATCHING AS YOUR LIFE PASSES YOU BY & WAITING TO BE ASKED TO PARTICIPATE AGAIN. ]

For me it is the slow-death of Life being sucked away long before my time is due. It is being in constant - medically unmanageable - pain. Sometimes the pain-levels are acute and I am left to suffer. It is not knowing from one day to the next what one will be capable of doing. It is the neglect by the medical establishment of patients and the disease itself. The MRC & the NHS invest almost nothing, despite there being some 250,000 people with M.E. (#pwME) in the UK. It is the failure of the MSM to investigate, nor even to accurately report stories, failing almost invariably to check the facts.

M.E. kills - slowly, torturously, ceaselessly!

This is my M.E.

International M.E. Awareness Day, 12th May 2014

Myalgic Encephalomyelitis is the official World Health Organisation (WHO) name for M.E. It means something like pain & swelling of the brain & spinal chord. There is a sort of British cabal of psychiatrists who believe, for it is a matter of faith for them despite evidence to the contrary, that it is a psychiatric problem.  Interestingly the same argument this côterie put forward for explaining M.S. way back, and so on… Thankfully neuroscience and break-throughs in bio-medical research are countering their argument.

Unfortunately, making matters complicated for researchers, very few sufferers have just M.E.; many of us suffer from multiple conditions plus co-morbities. Inter alia I have myalgic encephalomyelitis (ME), fibromyalgia (FMS), irritable bowel syndrome (IBS), Raynaud's syndrome, osteoarthritis (OA), a gout-like arthritis, … Only the latter gives visible symptoms, when I swell up like the Michelin man. Thanks for not judging by outer appearances.

For this awareness day I plan to keep a live-blog of events as they concern myself throughout the twenty-four hours. This means that the blog will be hopefully constantly, but most likely sporadically updated. So please come back from time to time.

criquaer

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03.27  Much earlier than is typical I am awoken from a feverish nightmare after four hours sleep. My heart-rate is very rapid. It is the sensation of being almost in an anxiety-attack. I take several deep breaths. Damp, I have to remove my bedwear, which with stiff limbs is no easy task. Then I shakily and with a great deal of pain succeed in raising my plastic beaker of water and take a gulp. Time to distract myself now from the still not fading nightmare, the slowing but yet still racing pulse and the coursing, throbbing pain.

05.12  Heart-rate has slowed, but still not back to normal. Have posted and responded to various social media (SM). So tired. Need to sleep; so going to have another attempt. Going to use some visualisations to try to assist me in going to a happy place.

05.37  I chose the wrong time to try to sleep. A downpour means my arthritic bones have gone into hyper-awareness and I am now in fairly intense pain. No matter what position I place myself in, the pressure is like a slow torture, gradually building in intensity. I just feel shattered.

05.43  A pressure head-ache has begun to throb. Heart-rate slowed down and returning to normal. Eyes are beginning to react photophobically: I have had to reduce the computer-screen's luminosity down to minimum. Shall have to stop typing now, as acute and sharp stabs of pain in my head and eyes.

09.00  Another nightmare wakes me up. This time, a regular type for someone who is mobility-impaired, I am faced with flight after flight of stairs. Whilst I rarely dream I am in my wheelchair, in this narrative my companion is so seated. Neither of us can escape where we are.

09.05 More rain: sudden increase in pain all over my body. Still feeling exhausted and in need of more sleep. I drop off quite quickly, but sleep fitfully.

11.12  Really heavy rain lashing on the roof and the windows brings me back to consciousness. Another wave of pain. I distract myself with the lovely aroma filling the room: the negative ions of summer rain. I fall back to sleep.

13.26 Awaken, stiff, achey; but headache has dissipated and level of photophobia has ameliorated - can cope with ordinary spectacles (rather than sunglasses) in my bed-cell, although still with the blind down (sorry #ConDems!).

13.52  Email my lovely contact at Altrincham JobCentre Plus, who has been kindly trying to help me extract information, even just a response from Bolton Benefit Centre. After twelve fruitless months of trying to get info, some of which is actually offered by DWP in their correspondence, from Bolton, I eventually had to follow through with a threat to involve my MP, Graham Brady, chair of the backbench 1922 Committee. He has so far succeeded in getting Bolton to contact ATOS and the DWP FOI section; but as yet no explanation as to why they refused/failed to respond to my correspondence and that of Altrincham JCP.

14.17  I received an invitation, which I accepted, to attend a speech by Ed Miliband in Manchester this evening. I have just sent my third email trying to determine whether the venue is accessible. It seems the Labour party are not responding. However, it is a lot of effort for me to wash, dress, travel and attend such a session (I will be ill for several days afterwards) and also will cost me the best part of fifty pounds in taxi fares. I do not wish to waste my energy nor my money.

14.27  The venue IS accessible. I can go. Now I need to find WoWCampaign's Ian Jones' question suggestion and write out a question, just in case I have an opportunity.


14.51  Made it to ground floor without falling - a god job as I forgotten to put on my pendant alarm. I am about to bring in the shopping and put away the chilled stuff. The rest will have to be done another time.

15.21  In order for me to be able to move, I need to warm up my muscles in a bath. This is risky for me, as I have poor equilibrioception and no-one to help me out of the tub. Fingers crossed that today will not be one of those where I get ultra dizzy and collapse. Well, if there are no further updates, you know what has happened!!!

16.14  Eventually made the taxi-driver realise that I would need his assistance in transferring my wheelchair into his cab. Despite being cloudy in Manchester, I needed to sport sunglasses to cope with what was for my sensitive eyes too much brightness. The cab-driver was happy to chat away, so I remained chilled listening to his tales.

16.47  The taxi-driver gets me to the disabled ramp and unloads the wheel-chair; however, made no offer to help me into it. I succeeded in setting up the chair and sat down and then wheeled myself over to and down the ramp. A lovely young Manchester lass offered assistance, for which I thanked her, but declined.

17.05  The doors to the venue are opened and we all file in.

17.10  Noticing a gaggle of wheelchair- and mobility scooter-users I wheeled over to join them and in so doing think I recognise Wayne Blackburn. And indeed it was. It was great to catch up and have someone to natter with.

18.00  Ed Miliband gives us his key-note speech on the future of the NHS. He is supported by Andy Burnham, shadow health secretary. He goes straight into a Q&A session. One questioner from Liverpool, an unemployed REMPLOY worker, enquires to treatment of the disabled and the WCA (work capability assessment). Ed Miliband categorically stated that he would support those with disabilities who can work into the world of work and those were unable to work would still be supported by the state.

19.05  I have to depart, I needed the loo (wc) & meds and was fading fast. My blood pressure was dropping.

19.10  Ablutions completed and offered assistance by passers-by on entering and exiting in relation to the door (which might suggest more about toilet design than my abilities).

19.17  Taxi arrived on time and swiftly carried me home, breathless from wheeling my chair and having to speak.

19.59  I am back home and back on-line after a technical hitch - it was the wheel of doom and I could do nothing to get rid! I am breathless, shaking and suffering muscle spasms in my left arm and thighs. I need to eat, drink and take meds. then I shall back fill what has been going on.

20.51  Tucked up in bed. Now suffering tremors and muscle spasms all over. The house thermostat says it is warm on every floor. My body is not so sure! My eyes feel heavy. My heart-beat is slightly erratic from all the physical exertion.

22.44  Was trying to watch the news, but my hyperacuity, or noise-sensitivity, means I have yet another throbbing head. Going to settle down now and hope for a good night's rest.

Thanks for reading, folks. %)

UPDATE

Well, after a good ten hours sleep, uninterrupted by nightmares nor fever, I awoke to:

* a mouth-ulcer on the end of my tongue;
* eczema patches around my eyes;
* heavy, prickly eyes;
* photophobia;
* a throbbing headache;
* fingers swollen to the size of chunky sausages;
* painful breathing due to costochondritis flare-up;
* pain in my hip & lumber due to aggravating the osteoarthritis;
* ear-ache in my right ear;
* an irritatingly itchy skin-rash all over;
* cold-like or allergy symptoms to goodness knows what;
* zits around my T-zone.

I have been awake an hour and a half and as yet still have been unable to leave my bed. I have no water and am rather thirsty. Shall have to wait till body can move though.

Obviously yesterday was not a completely typical day, as I would not normally go to political meetings! But dealing with bureaucracy - not solely DWP - is pretty much a regular occurrence.

I expect to be knocked back for a couple more days yet due to having gone on that wee jaunt. Sometimes the health price is worth paying.