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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 professionals.

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.

CFS , ME/CFS ,  ME , research , 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

CFS , ME/CFS ,  ME , research , funding 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.

To 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...

 

Hi All

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.

You 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.

Thanks all

-- Mandy, Sleepydust Forum Moderator --

 

 

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