'A blood test is just a year away'

Discussion in 'Fibromyalgia Main Forum' started by quilp, Nov 28, 2008.

  1. quilp

    quilp New Member

    I remember Gow, saying that in 2005, Kerr in 2006 and now Whittmore in 2008. I really appreciate the strides that these special human beings are making but i can't help feel increasingly sceptical. Hope is a wonderful virtue, but have the boundaries been crossed here ? Do these physicians really believe what they are claiming, or are their motives hiding beyond our field of view ?

    Love Mark
  2. Bluebottle

    Bluebottle New Member

    Both these research projects rely on charitable funding, so they can only work as fast as the funding allows. It's up to each of us to each send them what little we can - the governments and big drug companies are not interested in biomedical research into M.E./CFS.

    Donate to the Whittmore Peterson institute here:


    Dr Kerr is funded by the tiny CFS Research Foundation, who welcome donations:


    Dr Kerr has been repeatedly refused funding by the UK's medical research council, who have allotted millions of government research funds to the very psychiatrist's who insist we have an 'abnormal illness belief' and who have called us the 'least deserving sick of society.' The whole thing stinks. It has been written about by another tiny UK charity, the M.E. Research UK in 'The Medical Research Council: a case to answer?':

  3. quilp

    quilp New Member

    Have you been to one of the regional 'ME Clinics' ? The one in Leeds ( UK ) is based in the Mental Health Department ( surprise surprise ) I went two years ago. I could never have gone when I was first ill, simply because I couldn't get out of the house, I was so poorly. Besides, these clinics weren't available then.

    I have to say I have never seen so much money, spent so badly, by so few. The clinical immunologist couldn't answer one single question about this illness. To think that that money could have been spent on research. It makes me so angry.

    Did the psychiatrists really say that we are 'the least deserving sick of society' ?
    I was a member of Action for ME until Tansy pointed out their 'psychiatric bias'. Sometimes it's just so hard to know who to turn to. After almost 14years of suffering I still don't have full validation from those closest to me; those that say they love me. If only they knew what I have been through.

    Love, Mark

  4. Bluebottle

    Bluebottle New Member

    Michael Sharpe said that Mark. I'm a member of the 25% group.

    I now refuse to go to the clinics Mark as graded exercise has made me so ill before & because I was treated like a naughty little girl who was pretending to be ill. My GP keeps on referring me without asking.

    They rang to ask why I hadn't made an appointment & I asked them what biomedical treatment they offer. They answered that they only offer psychological interventions. They couldn't tell me what use these would be for borrelia, cryptostrongylus pulmoni and micro-cocci.

    The Gibson report advised that the same amount of money being spent on these clinics be spent on biomedical research. This was ignored.
  5. aftermath

    aftermath New Member

    As much as I appreciate the work he is doing, I feel that some of these quotes--especially those made by Dr. Kerr in 2006--were over the line in that they provided false hope to a lot of people.

    Unless he was taken out of context, the statement that "there could be a cure within a year with proper funding" was totally baseless.

    The US research budget for ME/CFS research this past year is less then $5 million/yr. Private capital raised by the CFIDS Association and other groups probably amounted to another $2 million.

    Care to guess what the funding level for Muscular Dystrophy is like? The Jerry Lewis MDA Telethon averaged about $55 million PER YEAR over the last 12 years! He raised $1 mil (what the CFIDS Association raised last year in 2007 dollars) in 1966!

    If you look at the numbers for AIDS, Cancer, etc, you will see that they have even greater budgets. As I've said ad nauseam, our research budget couldn't pay for the toilet paper and stationery in the labs for these other diseases.

    Believe me, I really hope that someone proves me wrong. Still, I don't see how anyone can be optimistic when we don't even know the cause of this illness and diseases with long-known causes have not been cured.

    I write this not as a fatalist, but in an attempt to push EVERYONE to join one of the major groups lobbying on our behalf and to participate in all of the letter writing campaigns, etc.

    From Cort Johnson's PhoenixCFS site:

    "Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.

    Strong words yes but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. They’ve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyone’s justification for not supporting these organizations the result is the same - a loss of power – and an enfeeblement in an environment which is hostile to our interests.

    We desperately need to build these organizations into powerful partners that can make a difference at the highest levels. Sick patients working by themselves can’t do that but they can provide the resources professional organizations need to make a difference. Let’s start with these projects – let’s make a run for it. "

    If you are sick with this illness and have $35.00 to your name that you do not need for food clothing or shelter, you need to join one of these organizations. Only TOGETHER can we speak loudly enough that the elected officials will listen.
  6. TeaBisqit

    TeaBisqit Member

    In response to >>>>>"Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.<<<<<<<

    Most of us simply aren't well enough. It is that simple. The very reason I'm housebound is the very reason I can't fight. I can barely do the minimal things a person needs to do in a day to live. And most of the time, I can't even do that. That is the true horror of this disease. We are not well enough to do the fighting required. I can't even fight for my supposedly lost medical records. I can't do the phone calls, I can't keep up with it. I rarely ever speak to anyone anymore. I can't take the sensory input and the audio processing disorder makes everyone sound like they're speaking in a foreign language. People just don't understand that we have serious neurological damage and can't do what's required.
  7. tansy

    tansy New Member

    whilst the psychobabblers get the lion's share of taxpayers money. Dr Kerr had planned a specialist clinic but was refused NHS funding; his has fewer members of staff now as well.

    The Gibson report also called for an inquiry into the vested interests involved but Whitehall refuse. If the Judicial Reviews are successsful MPs, who support PWME, will have more clout when working on our behalves.

    The 25% group is excellent and currently doing all they can for all PWME, not just the severely affected. I wish those who feel their ME is not severe enough would join the 25% group because it would give them more clout. The MEA may seem lacklustre at times but they concentrate on ME (Ramsay et al) rather than the wishy washy NICE definition of CFS/ME.

    Another hurdle for us is that organisations like AfME and AYME are a major part of the problem yet they are the ones receiving funding and who are seen as representing us. They work with the psychobabblers.

    There are MPS who want biomedical research. Health spokepeople for both the Conservative Party and Lib Dems seem to be aware of the pitfalls in only offering GET and CBT so it's a good time to start writing some letters to them asking for their help; only a few sentences are needed.

    tc, Tansy

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