Provide funding for biomedical research into Myalgic Encephalomyelitis (ME & CFS)
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Myalgic Encephalomyelitis (ME) often referred to as Chronic Fatigue Syndrome (CFS) a debilitating chronic neuroimmune disease worsen after even minimal physical, emotional or mental activity causing many symptoms of which the main two are chronic pain and severe fatigue.It is estimated that 7 million people live with ME/CFS worldwide, with approximately 250K in the UK of which roughly 25% are severely ill bedbound for years with little or no help from healthcare professionals.
The majority of the general public through no fault of their own consider ME/CFS as a 'yuppie flu' which is highly insulting to people living with this condition. The fatigue is in no way the same as being exhausted or tired as this can be resolved with rest, whereas ME/CFS Fatigue is completely wiped out, bedbound long periods of time and all energy is used up with no more energy immediately forthcoming.
There are two main reasons that people with ME are missing:-
1. Myalgic Encephalomyelitis (ME) often referred to as Chronic Fatigue Syndrome (CFS) has for too long been classified as a psychosomatic (meaning that poor mental health causes the symptoms) despite the World Health Organisation classification in 1969 as it been a Neurological disorder. This myth has been perpetuated by certain media sources and medical research ie PACE Trial that has been shown to be a flawed study. This research recommended GET/CBT and we now know that a majority of patient's condition worsen, yet it is still being advised by Healthcare Professionals around the UK as per the National Institute of Clinical Excellence (NICE) Guidelines. ME campaigners hope the NICE guidelines will be changed asap , rather than waiting until 2020 for a review and a petition can be found here:
2. Lack of funding for biomedical research is highly evident with RT Hon Jeremy Hunt stating to Emma Donohoe in a recent BBC Newsbeat Documentary (https://www.bbc.co.uk/iplayer/episode/p065b4lp/newsbeat-documentaries-me-and-me )that £3.35M has been allocated. This works out at just over £2 per person, maybe less as the figure of 250K people with ME may be a lot higher now. This compared to other funding for other conditions is woefully inadequate. We care about the tragic human cost that is evident with many recently sharing their overwhelmingly upsetting stories either by attending or coming online to virtually support the #MillionsMissing global day of protest. However, we thought we should mention there is the financial cost to the economy too.
Therefore, we call for Rt Hon Jeremy Hunt to increase the allocated funding for ME/CFS research to help those who are suffering without the support they need around the whole of the UK. People with ME are dying due to lack of research and we demand that the government listen to the voices of the millions missing
#CanyouseeMEnow ? #MEresearchUK #pwme #MyalgicE #ME/CFS #millionsmissing
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