On Friday, 30th October, Change For M.E. Change For Us launched their short film, The Last Great Medical Cover Up.
The film details the extent of medical discrimination and neglect people living with M.E. are being subjected to every day. The 35 minute documentary features 6 individuals expressing what it’s really like to have a condition that the majority of the medical profession are so unwilling to believe.
Since its release a few short days ago, the film has had over 5,000 views, and is being widely shared online.
But we still need your help. Change For M.E. Change For Us actively works towards an increase of reliable NHS involvement in M.E. In support of our short film, we’ve launched a petition calling for a reform of NICE guidelines, as well as funding for specialist home care for those severely and moderately affected by the condition.
Please watch The Last Great Medical Cover Up now and sign our petition.
Support the Fight. Our Time Is Coming.
4 thoughts on “Share this film and join the petition to reform the NICE guidelines”
Time for a change
It is time to sweep M.E from under the carpet, shake away the dust and give it a real investigation.
There’s research happening out there, but the powers that be don’t want to recognise it, because it doesn’t come from them. If only the various researchers would talk to each other, collaborate, and share their knowledge. There are little pockets of information all over the place, around the world, some of it conflicting, some of it crosses over.
A world summit is needed, along with some open minds, and agendas left back at the office ( for the good of all concerned, especially sufferers )
This hidden disease needs to be brought out of hiding to stare the world in the face, allowing everyone to see what it is, hear what it is, and understand what it is.
There is so much denial from the community, professionals, employers, family and friends. It is hurtful, patronising and insulting to the sufferer, whose self worth is eroded by doubt and criticism from those they encounter.
Funding must be allocated from central government, for research, occupational health support to sufferers, and proper training given to Doctors and GP Practices.
Also, apart from being beneficial to us, it must be in the government’s interest to get us all well, and legitimately, back in the land of the living as contributors to society. I’m sure we all would give anything to be genuinely well enough to live our lives fully, not just exist in isolation as we do at the moment.
In 15 years, since my diagnosis, we are no further forward in terms of treatment options, or methods. CBT is insulting, because this is not ‘in the mind’. Pacing or graded exercise causes more exhaustion and further damages muscles.
In my humble opinion there are insufficient trained staff and specialists, and sufferers are dished out far too many prescriptions for yet more painkillers with nasty side effects. It’s like trial and error. Anything to mask the symptoms and get us out of the surgery.
The claims of the PACE trial, from which the NICE guidelines were developed, are at odds with both patient experience and emerging reputable research which has demonstrated that there are significant abnormalities in the muscle, brain and immune system – all of which are almost certainly involved in the production of ME/CFS symptoms, including exercise induced fatigue.
A recent MEA report has found that the majority of people with ME/CFS (= 73%) do not gain any benefit in symptom relief when CBT is used as a primary intervention and that over 70% found that GET made their symptoms worse.
Six eminent researchers have identified major flaws in the PACE trial and are urging the Lancet to accept independent investigation.
So, at a time when international medical opinion is accepting that ME/CFS is a serious neurological and immunological condition, it is frankly unethical that NICE is continuing to recommend two forms of treatment that are often ineffective, and in the case of GET potentially harmful.
My daughter has been suffering with ME for the past 5 years and is getting worse. She has been to several Boston specialists who have not been able to help her at all. I can see she is getting more discouraged each day, but tries to maintain a good attitude which is almost impossible some especially bad days. It is hard to believe in this day and age that no one can help these people with ME – must they continue to suffer with no hope?
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