A Manifesto for the ME Party .
Greg Crowhurst 5th May 2010
(Permission to repost)
Dear ME Patients and Carers,
Our circumstances are largely driven by the eroding of facts about ME
through the clever use of language and the compromising of truth;
miles away from any hope of proper research, treatment and a cure.
Why do you have to endure condescension and dismissal by neurologists
, doctors, nurses , social workers, not interested in your
Why do you have to endure inappropriate therapeutic techniques, for
your serious physical disease, as "treatments"?
Why do you have to endure the denial of the WHO categorising of
your neurological disease in the NICE guidelines and the promotion of
a biopsychosocial approach to your disease, when it is not a mental
Why do you have to endure a complete lack of biomedical ME clinics
and this dearth of biomedical ME clinicians ?
Why do you have to endure no government backing for physical ME research?
Why do you have to endure lobbyists and psychiatrists who have
vested interests in insurance companies being allowed to be advisors
to the DWP regarding guidance in your illness?
Why do you have to endure psychiatrists being allowed to
inaccurately define your disease with too few symptoms and promote a
vague symptom of fatigue that is not the primary dysfunction in ME?
Why do you have to endure the psychiatric lobby getting away with
changing the name of the disease from ME to CFS to ensure this wrong
Why do you have to endure the neurological nature of this illness
being dismissed and the people who have serious neurological
symptoms being denied a proper service because of that?
Why do you have to endure inappropriate therapeutic techniques being
promoted by NICE when they are not wanted by people with ME as they
make them more ill and disabled potentially ?
Why do you have to endure the vast array of unending ME symptoms ,
the fact that there are no drugs to alleviate them because the
Government has wasted millions of pounds upon pointless psychiatric
Why do you have to endure the isolation caused by people , both
medical, official and in society including families, who do not
understand this ME is a serious and severely disabling physical
Why do you have to endure living in fear that you will not get your
Why do you have to endure having to accept you will get wrong
treatment or poor treatment or no treatment for your ME ?
Why do you have to endure knowing that you are physically ill but
here is no appropriate treatment for you and there is not going to be
unless the untruths pedalled by the psychiatric lobby are drowned
out and shown to be false ?
Why do you have to endure knowing that there are few clinicians if
any who can actually help you ?
Why do you have to endure knowing that you have not had proper
biomedical ME tests and that you are not going to get them even though
there are tests that could be done ?
Why do you have to endure the psychiatric lobby downplaying this
serious neurological illness , saying it is a mental health issue and
that no research or tests are necessary ?
Why do you have to endure knowing that you need a proper diagnosis
and medical assessment but if your GP or clinician or benefit agency
doctor is psychiatrically oriented you are simply not likely to get
the right help and support that you need ?
Why do you have to endure knowing that as your neurological symptoms
worsen that there are no neurologists who are willing or interested to
help you ?
Why do you have to endure knowing that going to hospital for tests is
most likely a waste of time and energy and will lead to disappointment
because they will not do the right ME tests ?
Why do you have to endure knowing that if you need drugs for some
other condition they may well react badly because of your ME so you do
not know if you dare take them , yet there is no Consultant to advise
you or your GP ?
Why do you have to endure knowing that the psychiatric promotion of
the biopsychosocial approach is wrongly influencing doctors and
nurses who may have to treat you one day and will not understand how
very ill you are and will not therefore understand how to treat you
The ME Party would immediately begin to unearth the conflicts of
interest of industry sympathetic groups that perpetuate the needless
suffering of ME patients.(Walker 2008).
The ME Party would immediately cease all negotiations and wasteful
Government involvement of with the Wessely and associated Schools of
Psychiatrists ,Therapists and "Quack Busters". To argue science with
them is like arguing reality with Alice in Wonderland as she falls
through the looking glass. (Walker 2008)
The ME Party would seek an international agreement to end the
destructive global practice of "policy " – based medicine usurping
"evidence" - based medicine.
The ME Party will not tolerate the ongoing corporate takeover and
denial of ME any longer and will put an immediate end to the corporate
–led health care system that is being introduced rapidly into the UK,
against a background of increasing social control and state
The ME Party will cease all funding to any patient representative
group that has formed a partnership with those that deny ME exists.
The ME Party will establish an independent scientific committee to oversee all
aspects of ME research with full backing and make full funding and
backing for XMRV research a priority. (Clegg 2010)
…..oh and .the immediate reinstatement of Sarah Myhill, the complete
dismantling of NICE…
Members of the ME Party are currently occupying the GMC, MRC, Kings,
Barts, NICE.....(cf Phillips 2010)
All of us, can and must dream .
Clegg N (2010) in Greensmith J (2010) Open letter to Esther Rantzen,
when Independent candidate for Luton South, on behalf of the M.E.
Community Co Cure 4 May 2010.
Phillips T (2010) Battling for the powerless ordinary citizen Eastern
Daily Press, May 1 2010
Walker M (2008) Cultural Dwarfs and Junk Journalism . Slingshot