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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      • EspoirEspoir commented  ·   ·  Flag as inappropriate

        Unfortunately still relevant:
        Letter from 2003

        From "Corporate Collusion"
        Professor Hooper et al,  September  2007,  p72-75

        The journalist replied to Wessely, saying: “You are obviously a hate figure (and) it might be interesting to enquire as to whether hate figures have any responsibility for the way they are perceived. The inescapable take-home message (that has been reinforced by newspaper headlines) is that this condition has a large psychological component, that these people are imagining it, making it up, being hysterical, suffering from neurasthenia etc. And that is not only seen as downgrading the reality of their condition but also has practical implications as far as benefits go. Whilst I take your point that you have looked into the physiological side and found nothing, it does seem to be the case that a number of other equally erudite / careful scientists have looked there and found something that they do think is significant. I have to admit that when you set that body of work against the conclusion of the MRC that the biological area was not worth major funding, it is hard to escape the conclusion that you and the MRC are not taking the biological side seriously and that you do regard this as a psychological condition. You may say that you do take on board the biological aspect but the inescapable fact is that you are getting £2 million plus to research more aspects of the psychological side, a degree of funding that is not matched in any way by the funding from the MRC going to the biological side. The public perception of what is going on is that your actions on the issue of definition have tended to reinforce the psychosocial basis of the disorder rather than the biological one, which is at the heart of the reason why you have been so vilified. My opinion is that you would not improve anything by attempting to take any legal or other steps – you would be further seen as a major establishment figure attempting to silence / muzzle some poor powerless and chronically ill patients. A very simple step to change the perception of your position would be for you to give encouragement for a similarly sized grant to the one you have recently received, to look into some of the biological factors. It seems rather unlikely that there is something about CFS patients that makes them especially hostile and unreasonable, as opposed to people suffering from heart disease or multiple sclerosis (which) means the level of disagreement over CFS must reflect some underlying issue. I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.

        http://www.mecfsforums.com/index.php/topic,8706.0.html

      • Marjorie SwindlerMarjorie Swindler commented  ·   ·  Flag as inappropriate

        I respectfully request Funding for bio-medical research into M.E. and not the psychiatric lobby or big pharma. Thank you very much for all M.E. patients. xxxMarjorie Swindler

      • emilybemilyb commented  ·   ·  Flag as inappropriate

        To anyone giving a cursory glance over the situation from the outside, it probably *looks* very like the scenario that has been presented by some sections of psychiatry (eg Prof Wessely) this past week.
        But the reality is so shocking and implausible that I didnt believe it until I, sadly, had to face the facts from the inside.

        Unfortunately in order to really understand whats happening, in all it's horror and injustice, you have to either experience it for yourself, or take the time to research, read and listen. It will take hours, not 5mins, to really uncover the reality. but it is a fact that men women and children have been and are still being abused. And i dont use that word lightly. just because it's implausible doesnt mean it isnt true.

        It is a fact that while the psychiatric lobby believe their treatments to be 'evidence based' they omit to tell you that it's only the evidence that supports their ideas that is considered. you may as well let only 1 side present their evidence at a court case, and then declare the verdict 'evidence based'. All evidence (of which there is masses) that they are mistaken is stifled dismissed or ignored. And they carry on unchecked and with impunity.

        What i pray for is that some suspicious investigative journalist out there will dig up and publicise the reality that very ill people are being left to rot (at best), despite certain psychiatrists public claims to the contrary.
        Many Drs and scientists around the world know the psychiatric model of primary causation of ME is simply wrong. And yet the public are told the lie that the battle is between patients and doctors/scientists. That is just a blatant lie. See Dr Nancy Klimas, Dr Anthony Komaroff, Dr Jose Montoya, Leonard Jason, to name a tiny few of the many. All eminent people in their fields.

        Lies are being told and we need help, we've clearly gone as far as we can on our own.

        Please help us 38degrees.

      • Liz WillowLiz Willow commented  ·   ·  Flag as inappropriate

        Look at the methodology of the psychiatric studies, especially the cohort selection. Compare those studies to the 4000+ that indicate ME is a neuro-immune disease. We need scientifically-sound research and better treatments. I've had ME for 21 years. Focus on the etiology. Multiple Scelorsis, Lupus, and other mutli-stytemic diseases would not be treatable if research wasn't focused appropriately.

      • les donaldsonles donaldson commented  ·   ·  Flag as inappropriate

        It isnt only the people who have ME whose lives are affected by it. I care for my wife who has had ME for 21 years now and it has impacted on all the family. Appropriate research is desperately needed to solve this enigma once and for all.

      • Margaret LaverickMargaret Laverick commented  ·   ·  Flag as inappropriate

        Bio-medical research is required to discover the truth about M.E. This should be funded to find a diagnostic test and treatment. All ME patients want is treatment to allow them to get their lives back.

      • Margaret LaverickMargaret Laverick commented  ·   ·  Flag as inappropriate

        The British press conitinue to push forward the opinions of Wessely & Co without looking into or reporting the issues fairly. We really need you to take up our campaign and finally get funding for the clinical/biomedical research.

      • isolde daveyisolde davey commented  ·   ·  Flag as inappropriate

        As a recovered ME sufferer, I absolutely categorically state that it is a neurological rather than psychological illness. The processes that created recovery would had been completely ruined if people had been more insistent on my receiving psychiatric care. Please listen to the sufferers and those that have recovered, as they are the ones who know what is happening, not people who seek to profit from the misery that is ME.

      • Lucy JamesLucy James commented  ·   ·  Flag as inappropriate

        Bio-medical research is required to discover the truth about M.E. That is what should be funded.

      • Jan MaverickJan Maverick commented  ·   ·  Flag as inappropriate

        We really need some help with this, we need a proper journalistic investigation for the truth to get out. The past week has shown that the British press conitinue to take Wessely &co at their word without looking into things for themselves and reporting the issues fairly. We really need you to take up our campaign, thanks.

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        Sooner or later the truth will come out and the people responsible will be taken to task for their contribution to this travesty.

      • gary gary commented  ·   ·  Flag as inappropriate

        combinations are the causes,heavy metals,are in all organs and muscle tissue,this keeps the immune system working 24/7,where they come from is each individuals own story,you complete the mix with chemicals,from food etc,the body becomes acidic,say hello to mould,yeast and fungus,then comes ailment after ailment and to manage the ailments more chemicals are added,every illness can be reversed the hardest one to overcome is the disease of the brain that stops you from looking after self,

      • Martha GandelmanMartha Gandelman commented  ·   ·  Flag as inappropriate

        Why does The UK continue to ignore the thousands of documented studies showing ME to be a serious neurological illness involving the immune, endocrine, cardiovascular systems............

      • Barbara KellBarbara Kell commented  ·   ·  Flag as inappropriate

        Would those who comment please remember to use the vote button at the top left hand side of page. Some seem to be commenting but forgetting to vote. Thanks.

      • Hal KHal K commented  ·   ·  Flag as inappropriate

        The psychiatrists have had it all their way for too long re research funding for M.E., they got the lot over the last 10 years. They have already thrown away enough of taxpayers money. Time for a major reality check

      • Barbara KellBarbara Kell commented  ·   ·  Flag as inappropriate

        Lack of bio-medical funding in the UK for the past decades has meant that many people suffering from ME/CFS have been denied any form or research which could lead to cause and treatment. All bio-medical research done in this country has been funded by patient groups and charitable organisations. Our numbers at 250,000 are more than Parkinson's, MS and Aids all added together. The funding disparity is hugely disproportionate. The Gulf War Syndrome veterans are experiencing the same kind of marginalisation as us, with psychiatry trying to pretend that they also imagine their symptoms. Hard to take is the facts that not only do the vets themselves become ill, but also their families and they also have a high incidence of birth defects. So not only do they somotise their own symptoms but have the amazing ability to pass this on to their loved ones. The grip which the psychiatrists hold over the patients and the media needs to end for those of us who are ill to be given any chance of treatment and recovery.
        Why would anyone want to live the half life we are driven to, to have need for our children or parents care for us. We are a group of intelligent highly motivated people who lived life to the full before falling ill. We want only a form of treatment which will enable us to get on with their lives.

      • gary gary commented  ·   ·  Flag as inappropriate

        if it was funded by clinical,that would mean they would find the causes of M.E. is the same as PTSD,Combat stress, gulf war syndrom,and every other illness on the planet,ever wonder why they can diagnose everything and cure none

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