ME/ Chronic Fatigue Syndrome Research
The Lack Of Research Into ME / CFS
When it comes to finding out more about ME / Chronic Fatigue Syndrome, there is a distinct lack of research and funding.
Read more below...
Please note: Post Viral Fatigue Syndrome, Myalgic Encephalomyelitis, and Chronic Fatigue Syndrome are believed to fall under the umbrella term 'ME/CFS'. To make it easier for you to read through this page, Sleepydust will use the term 'ME/CFS' to refer to them collectively.
Scientists are discovering more and more evidence that shows that ME/ Chronic Fatigue Syndrome is a real, organic, neurological illness.
The problem is that there is not enough research being made into this
illness, so progress is slow. In fact, it is only in recent years that
compelling evidence has been emerging, which confirms that ME/CFS
really is a physical condition.
So, much more research funding is needed before we are able to really
understand this condition. An accepted diagnostic test has yet to be agreed upon, and a universal cure has yet
to be discovered.
"Illnesses are most easily accepted when they have a specific clinical
or scientific 'signature' - a biochemical test, a cluster of specific
symptoms or signs, etc. - that confers legitimacy in the eyes of healthcare
Until then, patients are in a no-man's land between the living and
the well, subject to a variety of quasi-therapeutic interventions and
the ministrations of charlatans.
ME/CFS has been called the "disease of a thousand names", but it has
also been the disease of a thousand false dawns and a thousand broken
promises. Yet, the discovery of a clinical or scientific 'signature'
for ME/CFS, indicative of the physical terrain, would transform this
situation at a single sharp stroke."
-- MERGE (A charity that funds research for ME/CFS)
From: 'Gene Research: A Scientific
'Signature' for ME/CFS ?' --
Sadly, funding for ME/CFS research is sparse. There is a distinct lack
of funding by governments world wide, including the UK and USA. Most
research into CFS has been funded by patient advocacy groups and charities,
and the studies have been small.
In 2005 the continuation of the revolutionary work being done by Dr Gow
and his team was threatened when they could not secure further funding.
Other researchers are experiencing the same problems - there just isn't
enough funding for ME/CFS research out there. If you would like
to donate, please contact MERGE here.
EDM No. 260 - The Call For Government Research Into ME/CFS
If you live in the UK, please ask your local MP to sign the 'Early Day Motion
260', which requests that the government takes an active involvement in
the funding of CFS research.
find the name of your local politician, click here...
Once you've found the name of your local politician, you can then look
up their contact details. To
find your MP's postal or email address, click here...
While we are writing to our MP's could we ask them to also sign Early
Day Motion (No. 260) for ME research.
This is what the Early Day Motion (No. 260) says:
"That this House notes that 2005 is the 50th anniversary of
the first description in medical literature of the illness myalgic
encephalopathy (ME); is concerned by the subsequent lack of scientific
research into the illness during that time, which has been a cause
of distress to the quarter million ME sufferers in the UK; reminds
the Government of the study, ME: Cost to the Nation, that put the
annual economic cost of ME at £3.5 billion; is dismayed to learn
that one of the few contemporary scientific studies into the causes
of this illness, carried out at Glasgow University, is under threat
from lack of funds; and calls on the Government to provide the necessary
funds to secure and promote this and other studies into the cause
and treatment of ME."
At the time of writing this, 94 MPs have currently signed this motion
to get goverment funding for research into ME.
can see if your MP has already signed EDM No. 260 here...
The list of names is on the right hand side, I'm afraid they are in
no specific order, but you can also look up your MP and see all the
current EDM's they have signed here...
If you click on their name it then lists all the EDMs they have signed,
and you need to look for No. 260 in their list.
If your MP's name is not there please
do use the links above and ask your
MP to sign EDM No. 260, so that us sufferers can get some goverment
funding into ME research.
-- Mandy, Sleepydust Forum Moderator --
Category: lack of ME/CFS research
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