The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
What the Bleep is "ME/CFS"
As part of our ongoing campaign to get rid of the shameful label that is "CFS" I have posted a short "tooltips" essay on the front of Stonebird :
I will carry on campaigning , in my own way, to get rid of CFS, no matter the practical issues.
I was part of the Learning Difficulty/Mental Health , People First/Survivors Speak out movement back in the 80's; this coincided with the closure of the large mental hospitals and asylums; I witnessed , at first hand, how very meaningful and extraordinarily powerful it is for people to take their power back - and how much names and labels mean.
When I trained as Nurse, my qualification was "Registered Nurse for People who have a Mental Handicap." Today, not that many years later, "mental handicap" us just so inappropriate, the correct term to use is " Learning Difficulties".
A while ago, those same human beings were being classed as "Idiots", "Imbeciles" , "Morons" or "Cretin"( from the French for Christian : Christ-like), terms that were slowly replaced by the much more "enlightened "Retarded" in the 1960s.
"Spastic" is no longer an appropriate label for someone who has Cerebal Palsy. Still the Spastic Society was going strong until recently and who calls someone with Down Syndrome a "Mongol" anymore ?
"CFS", like so many labels before it, has now become the most derogatory term; it is high time people with ME take their power back and get rid of it.
The medical profession have lrealy let people down by their use of the term CFS , by not speaking up loudly enough - by caling it a "Syndrome" rather than a disease.
Much better if everyone called it Myalgic Encephalomyelitis - its proper, true name.
I am spurred on through my involvement locally, with the NHS. I have been profoundly shocked at the across the board disdain of people labelled as having "CFS" : rarely is the term "ME" used and the talk, at the highest levels here is about Wessely and the "gold standard" that are the Oxford Criteria
What about all those CFS papers that have been published ?? Those authors frankly have let us down, using the wrong name.
What about all those papers on Mental Handicap ? What about my own qualification ? What about all that published research on the "feeble minded" ?
You move on; that's all. In the history of human services, that is the way progress happens. You make a stand for the truth and move on from a clearer place.
(This is taken from :
“Severe ME : Notes for Carers” : http://stonebird.co.uk/Notes/index.html) Many world-class clinicians state that ME is either an infectious disease, or
an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes et
al 2014), requiring a skilled biomedical response. ME was recognised as a specific disease entity by The Royal Society of Medicine
in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. In the USA, ME ranks second only to HIV as the cause of serious, long-term illness.
(Hooper 2004)Cycles of severe relapse are common, as are further symptoms developing over
time. Around 30% of cases are progressive and degenerative and sometimes ME is fatal. (National CFIDS Foundation). Two reviews have concluded that, “Subs…
Stonebird Greg Crowhurst Aug 30th 2017 On July 27, I wrote to Sir Andrew Dillon re Myalgic Encephalomyelitis. This is NICE’s reply, dated 29th August. I have added the questions I asked and made some brief comments. Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):
diagnosis and management (CG53), Sir Andrew Dillon has asked the corporate communications team to respond on his behalf. I appreciate that this is an important matter for you and I have addressed of your questions in turn below. In March this year we advised you by email that we were unable to comment on how another organisation interprets our guideline and this is still the case. If the JCPMH have referred
to our guideline in a different way then you would need to take this point up with them directly, NICE is unable to get involved. Comment: Despite my best efforts, letters to the Department o…
People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means :
1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable GP or consultant . 3. There is little, if any, choice of biomedical ME consultants. 4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal. 5. The system expects people to fit into it and is not very accommodating of those who cannot. 6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Severe ME. 7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure. 8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, even indefinitely. 9. The impact…