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.
Stonebird 27th July 2017 Sir Andrew Dillon, Chief Executive, NICE Dear Andrew Dillon, Re : Myalgic Encephalomyelitis I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating
for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry. In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder. The response, in a letter to me…
Joint Commisioning Panel for Mental Health has recently published
for commissioners of services for people with medically unexplained
symptoms, specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder". This
is not the first time that an incorrect reclassification has been
attempted. In October
attempt was made to have ME ‘unofficially’
reclassified, as a mental disorder in a U.K adaptation of a WHO
publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of
Psychiatry, London and included under the classification F48.0
After a reprimand from the WHO, an erratum was eventually issued,
acknowledging that the
anyone wishing to challenge this report, the following may be of
Encephalomyelitis (ME) has
by the World Health Organisation since
as an organic neuro…
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…