The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
From a letter to Nick Clegg
I wrote to Nick Clegg, Deputy Prime Minister , yesterday. Here is an extract :
"Before the Election you set out the excellent Liberal Democrat position on
"The Liberal Democrats have long argued that
funding and research must be focused on the `bio-medical' factors
involved and not just simply managing the `psychological' issues.
Whilst I welcome the fact that NICE conducted an investigation into
ME/CFS, I do understand and empathise with the concerns raised about the
findings. The recommendation that patients with ME/CFS be treated using
an `Activity Management Programme' made up of Cognitive Behavioural
Therapy and Graded Exercise Therapy does not follow the World Health
Organisation guidelines which categorise ME as a neurological condition.
In failing to recognise the bio-medical problems of ME sufferers, the
NICE guidelines also fail to recognise the needs of ME sufferers.
To help address the unique challenges posed by a complex and poorly
defined condition like ME, the Liberal Democrats believe in the
establishment of an independent scientific committee to oversee all
aspects of ME research. We would also like to see the government and the
Medical Research Council work with ME sufferers and biomedical
researchers in order to achieve a proper understanding of the condition,
challenge unjust perceptions and consider the issue of research funding.
Whilst we welcome the establishing of local centres to focus on ME, we
feel the NHS is still too centralised and too unresponsive to the needs
of patients and families. We believe the special needs of those
suffering conditions like ME can be better addressed by empowering
patients and making the NHS more accountable at local level."
For the first time in many years I have a sense of hope. I am writing
to urge you to use your position in Government to help bring about
the biomedical investigations , tests, treatments , consultants and
respect for this disease, that are so desperately needed for ME
As long as ME is shackled to "fatigue" and a mental health
interpretation , without proper or adequate diagnostic criteria and
as long as psychiatrists who view ME as either non-existent or a
mental-health condition continue to advise key Government groups, ME
research and provision will be seriously undermined by this as well
as by the vested interests raised by the Gibson Parliamentary
Inquiry, but never addressed.
Please help us and all ME sufferers. Please promote the much needed
changes in attitude and practice required. My wife does not want to
die, as so many have done already, from ME.
This Election has been all about change. Change cannot come soon
enough for ME sufferers and carers like myself."
(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…