I suggest a campaign about ...

Funding for bio-medical research into M.E. and not the psychiatric lobby or big pharma.

The definition of M.E. as a neurological illness as classified by the World Health Organisation is widely acknowledged. However, why is the funding in the UK given to the psychiatric lobby and NOT into clinical or bio-medical research? Is it because this area is monopolised by those with particular vested ?interests

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    Nicola KellNicola Kell shared this idea  ·   ·  Flag idea as inappropriate…  ·  Admin →

    272 comments

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      • Anonymous commented  ·   ·  Flag as inappropriate

        Yes (in reply to the last comment). David Milliband appeared on the news some years back stating that ME does not exist. I exist and have ME. The reason there is little or no help is because government(s) don't want the real cause of this illness to come into public knowledge. If you research CFS you will see the symptoms are the same as ME. Look at the WHO site. CFS is the new label for ME so that sufferers can be labelled Psychotic. Google Sophia Mirza.

        Frances

      • Joy birdseyJoy birdsey commented  ·   ·  Flag as inappropriate

        For over twenty years children and adults have suffered with no support, they have been denigrated. I work on a help line for parents with children with ME they are harried by social services, education and accused of abuse, and any psychiatric psychobabble you can think of . Much like autistic mothers were years ago. WHY? because the medical insurance companies did not want to payout for a chronic disabling disease. People with this disease have had to suffer medical abuse for years, even though there is approx 4,000research papers showing anomalies in this patient group.

      • Eileen McDonaldEileen McDonald commented  ·   ·  Flag as inappropriate

        I have 'lived' with M.E for nearly 30 years, I always thought I would never wish this dreadful illness on anyone, but when some people are so cruel and blinkered about the thousands of people living this nightmare I wish they could have it for a month. They would very soon change their ideas. I feel like I have died, I drag myself through life and would give anything to feel well as I cannot remember what it was like. This illness robs you of so much ,careers, hopes dreams self worth, its like living in a painful invisable prison and still some doctors dont even believe it exists, shame on them. I pray that biomedical research will soon free us from this living nightmare.

      • Mary SchweitzerMary Schweitzer commented  ·   ·  Flag as inappropriate

        Dear me, Anonymous. I guess you don't know much about this. So let me use a simple analogy - As late as the 1960s, women with Multiple Sclerosis were told they had hysterical paralysis, and some were confined to mental institutions. Once it was proven to be a biomedical disease, at least patients were treated more appropriately. That is all we are asking here. M.E. has been categorized by WHO as a neurological disease since 1969. Most chronic diseases can have secondary impacts on mood - it is hard to live within the straightjacket of a serious illness, even more so when there is no support for your condition. But in the UK, the main "experts" are all psychiatrists who preach that there is no such disease, that "CFS/ME" is simply deconditioning caused by false illness beliefs, to be "cured" with cognitive behavior therapy and graded exercise. Millions of pounds have been wasted on research conducted by this cabal of psychiatrists (several of whom also work for insurance companies). These funds could more appropriately and productively be used to study biomedical aspects of the disease.

        Another way of looking at this is that most patients who come down with M.E. have some form of it for the rest of their lives. They are felled at a time in their lives when they are at their most productive. The result is both a loss of productivity, but also a loss in tax revenues (far more than whatever small gain some patients may get in the form of paltry living expense subsidies). So not only is the government not behaving in the best interests of these patients and their families, it is also not behaving in its own best interests.

        Careful study of the PACE report reveals that CBT and GET are both failures when it comes to getting patients with M.E. or a diagnosis of CFS back on their feet. And yet they remain the most commonly recommended treatments. A quarter of a million patients in the UK have been abandoned by their government and their society. The number will only grow. When will the nation come to its senses and do something about this horrible, life-robbing disease?

        There is substantial evidence about abnormal SPECT scans, CPET scores, immune biomarkers, endocrine abnormalities, pathogens (specifically herpes viruses and coxsackie B, but also, in some cases, parvo), toxic events; patients have trouble with memory, sleep, comprehension, expressive dysphasia, sensitivity to light and noise, walking - all to way to the sickest patients, who are bedridden in pain and confusion. Numerous cluster outbreaks have been documented over the years (and among nations), so there is most likely a component of contagion.

        Don't ask me where the funding will come from - if it were up to me, it would come from the bonuses given to financial advisors who helped take the world economy down. But take this seriously: the longer the government and medical institutions ignore this disease, misportray this disease, permit patients to be treated with cruelty drawn from a Dickens novel, it will only get worse. There will be more patients, and patients who are already sick will get worse. This cruelty must end. If not because you care about the suffering of the very sick, then perhaps because you care about your own relatives, because anybody can get this at any time.

        In short, it is time that this invisible disease becomes visible, mainstream, its patients cared for, and treatments made available that actually help.

        That is really what the petition is about.

      • Michael EvisonMichael Evison commented  ·   ·  Flag as inappropriate

        Dear anonymous, why are you using that name. Do working class people REALLY see M.E as a middle class malingers condition? All the people I know with M.E ARE working class! M.E is not a class issue. It respects no nations boundaries, No class distinctions, no religions and no cultures. The only thing that is prolonging the search for a bio-medical cure is the ignorance of governments, international insurance companies and the psychiatric lobby.

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        Why is ME considered by most working class people as the 'label' for middle class malingerers?

        What is the point of you question? The pharmaceutical companies will find a away to alleviate the symptoms of most diseases in time. It is not in their interest to cure anything.

        Perhaps it has not occurred to you that perhaps most people are of the opinion that ME is best dealt with by psychiatrists and not medical practicioners.

        Do you have a vested interest?

      • A JansenA Jansen commented  ·   ·  Flag as inappropriate

        The reason some comment seem to be a little negative, Richard, is because there currently is hardly any bio-medical research done into the disease. It's poorly understood and because of that patients go without treatment and are just dismissed with an "it's just between the ears". It's a very disabling condition though, and sometimes even fatal. Yet the only treatment on offer is talking therapy, with the claim that this is the only effective cure. Almost all research funds are pumped into this, but study results are very biased and grossly exaggerated. And definitely not a cure. Could talking heal Parkinson's or MS for instance? These conditions also were once believed to be psychological. Until science proved otherwise. And that's what patients want. Science.

      • RichardRichard commented  ·   ·  Flag as inappropriate

        I could vote for bio-medical research into ME, but not if it's expressed so negatively in this way. One person's hated "Big Pharma" is another person's life saving medication.

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        I know people who thought they had ME but got diagnosed with Lymes Disease and had to pay for private treatment as NHS won't.

      • LDLD commented  ·   ·  Flag as inappropriate

        It's about time this Country recognised the amount of people who suffer with ME and treat them as human beings with a genuine illness and not as the "undeserving sick" that the psychiatric lobby would have us all believe. They should provide more help and understanding to sufferers and their family/carers and it shouldn't be a postcode lottery for treatment and acceptance.

      • Michael EvisonMichael Evison commented  ·   ·  Flag as inappropriate

        For a government who believe in giving people choice, they are not practicing what they preach with regard to the bio-medical research and treatment of people suffering from ME and other neurological conditions because the only 'show in town' is psychiatric care which has been proved overwhelming to have failed.

      • MDMD commented  ·   ·  Flag as inappropriate

        The Norwegian Government have recently publically apologised for neglect to ME patients after Norwegian scientists last week discovered another piece of proof that ME is a biomedical illness. The UK Governments have actively denied ME for the past 20+ years and things need to change now!

      • Sara WhiteSara White commented  ·   ·  Flag as inappropriate

        There is little help. I've had this condition since giving birth 5 years ago. it has ruined my career, broke my long term relationship, divided my friends and family It's put enormous financial strain on my family. I'm a shadow of my former self. I had to wait 4 years for a private diagnosis. There are a small number of ME NHS programmes and I have been turned down twice due to lack of funding. I'm a 36 yr old single parent mother who now relies on a home help/carer. My life is in bits and I've had to fight for every bit of help from GP to mental health and hospital practitioners, just to be taken seriously. The NHS treatment is appalling for this disease. We need more money. ME is not a myth. It's a stigma like mental illnesses. Lets break the stigma. For anyone reading this who has ME or knows someone who does, please look up The Optimum Health Clinic (UK) run by Alex Howard a former ME sufferer. The clinic is amazing and geared specifically for ME suffers. Peace

      • Michael EvisonMichael Evison commented  ·   ·  Flag as inappropriate

        Norway's directorate of health. "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." Oh to live in a civilised country like Norway.

      • Jan Jan commented  ·   ·  Flag as inappropriate

        I have no vested interest here but it may help someone who reads this, for them to investigate it more. There is a proteolytic enzyme in Serrapeptase which reduces inflammation in the body. A great many of our ills are caused by inflammation in one area or another of our bodies. You can go onto a web site called goodhealthnaturally. The medical research companies should fund nutrition and education programmes for the nations health, instead of animal experimentation.

      • Andrew McLeodAndrew McLeod commented  ·   ·  Flag as inappropriate

        Action is also needed on the way this illness is regarded by the DWP when sufferers undergo a work capability assessment.

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