10 ms·

The problem is that some people have a vested interest in seeing CFS as an organic problem. These proponents of CFS are notorious for mounting hate campaigns a

The problem is that some people have a vested interest in seeing CFS as an organic problem. These proponents of CFS are notorious for mounting hate campaigns against mainstream researchers. That is one of the reasons why CFS has been delegated to the shadowlands of fringe medicine.

cfshacker 15y ago
Rubbish. The reason CFS hasn't seen more mainstream research is a chicken-and-egg problem of having no specific angle to research, therefore research isn't done, therefore there's no specific angle to research. When the XMRV stuff broke the research community did swing into action. Scientists haven't decided not to study CFS because someone on the internet hurt their feelings. Medicine isn't omniscient. Blaming extremely sick people for the lack of research into their predicament is absurd.
- vsync 15y ago
  > Medicine isn't omniscient. Blaming extremely sick people for the lack of research into their predicament is absurd. Granted. But medical doctors are people too. And I can tell you from my experience in the completely different field of technology that I'm far more willing to work with clients who are willing to listen, appreciate effort on their behalf, and are grateful for a solution or workaround that helps them even if it wasn't what they were hoping to hear. If a client made death threats to me (I've had some go off the deep end but never that far) I have to say I think that'd be a swift end to the working relationship.
- shiven 15y ago
  > When the XMRV stuff broke the research community did swing into action. Yes. And did prove conclusively that XMRV is not the cause for CFS. > Scientists haven't decided not to study CFS because someone on the internet hurt their feelings. No. Funding for research is what makes scientists study anything. Direct your anger to raise more funding for CFS research and you will get closer to knowing the patho-physiological cause (whether you like the answer or not means absolutely nothing). >Medicine isn't omniscient. Just like any other human endeavor. > Blaming extremely sick people for the lack of research into their predicament is absurd. The blame is very justified when you start receiving death threats. Talk of biting the hand that feeds. Jeez!
  - olliec 15y ago
    Shiven, it's not been proven "conclusively" that XMRV is involved in CFS. I'm not aware of any serious scientists stating as a fact it was the "cause". It remains controversial, and research continues. Ian Lipkin's study should yield results within 12months and that seems likely to provide more solid answers. CFS, in the UK, is a wastebasket diagnosis based on very loose and broad criteria. It's absurd for anyone to suggest it is one condition. I know of people who have been diagnosed with CFS, but then subsequently diagnosed with MS, bone disorder, and other conditions. ME, however, looks to be a specific subset. CFS and ME are not the same - ME is a smaller sub section of the patient population. In the absence of a biomarker and test, we are however reliant on diagnosis based on symptoms, and so I'm pleased to see the new ME International Consensus Criteria published this month. These diagnostic criteria were created by 26 researchers and doctors from thirteen countries, with 400 years of professional experience, who have treated 50,000 ME/CFS patients. Their view is that the correct diagnosis for many patients is ME, not CFS, and that ME is a very specific illness involving multiple systems. There's a copy hosted here: http://www.wpinstitute.org/news/docs/me-international-consensus-criteria.pdf http://www.wpinstitute.org/news/docs/me-international-consen... Shiven, no sensible person is condoning attacks, but you have completely misunderstood what is happening. The reason people are so angry with the likes of Wessely is that in recent years ALL of the very small amounts of UK gov money going into ME/CFS research has gone to psychiatrists, when there's plentiful research showing (when patients are properly classified using proper criteria) they are physically very sick indeed with significant dysfunction in the immune system amongst others. It's indefensible. The majority of sensible patients are saying that they want biomedical research. It's absurd to suggest, as you are, that all ME/CFS patients are being self-destructive and stopping research by attacking researchers when it's a tiny minority. That kind of stereotyping is offensive, in any context. Let's not, as the press have blindly done this week, tar all patients with the same brush. The poor results shown by The PACE Trial, even despite its sizeable cost, show the limits of what psychiatrists are able to do to treat ME patients (or even CFS patients). The psychiatrists are not succeeding in treating these conditions, and so clearly more work is needed. If Prof Wesseley was threatened in the way he says (I've seen no evidence or heard of prosecutions) then those responsible must be prosecuted and if necessary jailed. However this drama created by Wesseley apparently putting out a press release (why?) is distracting us from the real question, when will the UK gov start putting funding in place to (additionally) look at biomedical causes of ME, which is a quietly devastating disease?

cfshacker 15y ago

Rubbish. The reason CFS hasn't seen more mainstream research is a chicken-and-egg problem of having no specific angle to research, therefore research isn't done, therefore there's no specific angle to research. When the XMRV stuff broke the research community did swing into action. Scientists haven't decided not to study CFS because someone on the internet hurt their feelings. Medicine isn't omniscient. Blaming extremely sick people for the lack of research into their predicament is absurd.

vsync 15y ago
> Medicine isn't omniscient. Blaming extremely sick people for the lack of research into their predicament is absurd. Granted. But medical doctors are people too. And I can tell you from my experience in the completely different field of technology that I'm far more willing to work with clients who are willing to listen, appreciate effort on their behalf, and are grateful for a solution or workaround that helps them even if it wasn't what they were hoping to hear. If a client made death threats to me (I've had some go off the deep end but never that far) I have to say I think that'd be a swift end to the working relationship.
shiven 15y ago
> When the XMRV stuff broke the research community did swing into action. Yes. And did prove conclusively that XMRV is not the cause for CFS. > Scientists haven't decided not to study CFS because someone on the internet hurt their feelings. No. Funding for research is what makes scientists study anything. Direct your anger to raise more funding for CFS research and you will get closer to knowing the patho-physiological cause (whether you like the answer or not means absolutely nothing). >Medicine isn't omniscient. Just like any other human endeavor. > Blaming extremely sick people for the lack of research into their predicament is absurd. The blame is very justified when you start receiving death threats. Talk of biting the hand that feeds. Jeez!
- olliec 15y ago
  Shiven, it's not been proven "conclusively" that XMRV is involved in CFS. I'm not aware of any serious scientists stating as a fact it was the "cause". It remains controversial, and research continues. Ian Lipkin's study should yield results within 12months and that seems likely to provide more solid answers. CFS, in the UK, is a wastebasket diagnosis based on very loose and broad criteria. It's absurd for anyone to suggest it is one condition. I know of people who have been diagnosed with CFS, but then subsequently diagnosed with MS, bone disorder, and other conditions. ME, however, looks to be a specific subset. CFS and ME are not the same - ME is a smaller sub section of the patient population. In the absence of a biomarker and test, we are however reliant on diagnosis based on symptoms, and so I'm pleased to see the new ME International Consensus Criteria published this month. These diagnostic criteria were created by 26 researchers and doctors from thirteen countries, with 400 years of professional experience, who have treated 50,000 ME/CFS patients. Their view is that the correct diagnosis for many patients is ME, not CFS, and that ME is a very specific illness involving multiple systems. There's a copy hosted here: http://www.wpinstitute.org/news/docs/me-international-consensus-criteria.pdf http://www.wpinstitute.org/news/docs/me-international-consen... Shiven, no sensible person is condoning attacks, but you have completely misunderstood what is happening. The reason people are so angry with the likes of Wessely is that in recent years ALL of the very small amounts of UK gov money going into ME/CFS research has gone to psychiatrists, when there's plentiful research showing (when patients are properly classified using proper criteria) they are physically very sick indeed with significant dysfunction in the immune system amongst others. It's indefensible. The majority of sensible patients are saying that they want biomedical research. It's absurd to suggest, as you are, that all ME/CFS patients are being self-destructive and stopping research by attacking researchers when it's a tiny minority. That kind of stereotyping is offensive, in any context. Let's not, as the press have blindly done this week, tar all patients with the same brush. The poor results shown by The PACE Trial, even despite its sizeable cost, show the limits of what psychiatrists are able to do to treat ME patients (or even CFS patients). The psychiatrists are not succeeding in treating these conditions, and so clearly more work is needed. If Prof Wesseley was threatened in the way he says (I've seen no evidence or heard of prosecutions) then those responsible must be prosecuted and if necessary jailed. However this drama created by Wesseley apparently putting out a press release (why?) is distracting us from the real question, when will the UK gov start putting funding in place to (additionally) look at biomedical causes of ME, which is a quietly devastating disease?