Reposted from Andrea Pring. This is her response to the BMJ podcast on CFS. Why in the name of double-choc chip are people still giving Wessely places to spread his propaganda? Do follow the link to read other responses too.
I just want to quote briefly from one response (John's) and then it's over to Andrea.
John wrote: "CFS patients don’t and never have objected to there being ‘a social or psychological component to illness’, they object to the ignorant supposition, in direct contradiction to thousands of papers comprising the biomedical research literature, that CFS is a primary psychiatric or behavorial disorder which can be fixed with talk therapy, as would any patient suffering from any organic disease process."
Andrea wrote:
PERMISSION TO REPOST
Shame on you BMJ for your incredible bias. You have interviewed two researchers who refute the initial Science study by Lombardi et. al. but where is the balance? Where is the interview with Dr. Judy Mikovits or any of the other Lombardi researchers?
Where is your accuracy? The cohorts involved in the Lombardi study were NOT specifically from CFS outbreaks, they included patients from other parts of the US as well as the UK.
The need for more detail in the methodology is a moot point because a supplement was published by Lombardi et. al which gives more detail; more, might I add, than any of the negative studies. One only has to take a brief look at the Dutch study and compare it to Lombardi’s to see how pale in comparison it is. Had the neurologist bothered to do her research, she would have known the supplement exists. One wonders how much she actually read before forming her opinion.
Simon Wessely mentioned that he isn’t involved in ME/CFS research much anymore, yet he is one of the very researchers who has tried to disprove the theory. His paper was the first to trumpet loudly (through all the media channels Wessely has under his control as one of the board members of New Labour’s Scientific Advisory Panel) that THERE IS NO XMRV IN THE UK (as if a virus needs a passport – tell that to HIV). You may also ask why a psychiatrist is involved in a virology study at all. Let’s just say he makes a nice little earner with the ME/CFS clinics that he helped set up. Clinics that are psychiatric-lead and offer nothing but talk and graded exercise therapy. If a virus were found to be the cause of the illness he may well come down with a touch of Empty Pocket Syndrome.
You might also notice, if you were listening carefully, that the Dutch researcher said that he had to be fast, so he used frozen samples. Ask yourself why would he need to be fast? Why would he need to rush a study to publication? All three of the negative studies were clearly very clumsily put together, used ill-defined samples; i.e. used a conglomerate of patients presenting with fatigue but not necessarily ME/CFS. More specifically they did not use the same definition for ME/CFS, but used a definition that does not include one of the defining symptoms - post exertional malaise. Finally none of the studies made any attempt to follow the Lombardi study’s methodology. They cannot, therefore, be classed as replication studies and do not refute the initial findings. I believe the studies that are still being carried out will come up with more evidence. We need to be patient before we draw any conclusions. Readers may be interested to know that there are many patients from the UK who are sending their blood to be tested in the States and are coming back positive. But you won’t hear Simon Wessely mention that.
In terms of time spent in the peer review process, Wessely’s study was peer-reviewed for a few days and published in a ‘pay-to-publish’ online journal. In contrast the Lombardi study had a 3-month peer review period before publication in one of the world’s most renowned scientific journals, Science.
The three negative XMRV studies were all published in quick succession (along with Wessely’s brazen commentary) in an effort to dampen and quieten the interest in the virus. Why else would the Dutch researcher (who also favours the psychiatric-lead approach and has much to lose if a virus is found to be the cause) say that they had to work fast? What would they have to gain by rushing a study?
There is a lot of politics at play here, politics that may well be leading sufferers further down the garden path to ill-health. Patients in the UK are not given adequate testing or appropriate treatment. All that is offered to them is psychiatric measures. Psychiatric measures will not cure a serious NEUROLOGICAL disease (were you aware that M.E is classified as a neurological disease by the WHO and has been since 1969?) and neither will ‘rehabilitation’. You wouldn’t give a cancer sufferer CBT alone. Then why is it deemed appropriate to treat an ME/CFS sufferer this way? Yes CBT might help someone deal with the emotional problems they may have as part of a chronic illness, but that should be part of a wider programme of care and most certainly not the core treatment. The UK is in the dark ages in comparison to other countries. It’s an outrage that people are left in their beds for years, with tubes coming out of every orifice and no proper treatment other than pain relief and antidepressants. It’s a national disgrace.
Andrea Pring
12th March, 2010
Shame on you BMJ for your incredible bias. You have interviewed two researchers who refute the initial Science study by Lombardi et. al. but where is the balance? Where is the interview with Dr. Judy Mikovits or any of the other Lombardi researchers?
Where is your accuracy? The cohorts involved in the Lombardi study were NOT specifically from CFS outbreaks, they included patients from other parts of the US as well as the UK.
The need for more detail in the methodology is a moot point because a supplement was published by Lombardi et. al which gives more detail; more, might I add, than any of the negative studies. One only has to take a brief look at the Dutch study and compare it to Lombardi’s to see how pale in comparison it is. Had the neurologist bothered to do her research, she would have known the supplement exists. One wonders how much she actually read before forming her opinion.
Simon Wessely mentioned that he isn’t involved in ME/CFS research much anymore, yet he is one of the very researchers who has tried to disprove the theory. His paper was the first to trumpet loudly (through all the media channels Wessely has under his control as one of the board members of New Labour’s Scientific Advisory Panel) that THERE IS NO XMRV IN THE UK (as if a virus needs a passport – tell that to HIV). You may also ask why a psychiatrist is involved in a virology study at all. Let’s just say he makes a nice little earner with the ME/CFS clinics that he helped set up. Clinics that are psychiatric-lead and offer nothing but talk and graded exercise therapy. If a virus were found to be the cause of the illness he may well come down with a touch of Empty Pocket Syndrome.
You might also notice, if you were listening carefully, that the Dutch researcher said that he had to be fast, so he used frozen samples. Ask yourself why would he need to be fast? Why would he need to rush a study to publication? All three of the negative studies were clearly very clumsily put together, used ill-defined samples; i.e. used a conglomerate of patients presenting with fatigue but not necessarily ME/CFS. More specifically they did not use the same definition for ME/CFS, but used a definition that does not include one of the defining symptoms - post exertional malaise. Finally none of the studies made any attempt to follow the Lombardi study’s methodology. They cannot, therefore, be classed as replication studies and do not refute the initial findings. I believe the studies that are still being carried out will come up with more evidence. We need to be patient before we draw any conclusions. Readers may be interested to know that there are many patients from the UK who are sending their blood to be tested in the States and are coming back positive. But you won’t hear Simon Wessely mention that.
In terms of time spent in the peer review process, Wessely’s study was peer-reviewed for a few days and published in a ‘pay-to-publish’ online journal. In contrast the Lombardi study had a 3-month peer review period before publication in one of the world’s most renowned scientific journals, Science.
The three negative XMRV studies were all published in quick succession (along with Wessely’s brazen commentary) in an effort to dampen and quieten the interest in the virus. Why else would the Dutch researcher (who also favours the psychiatric-lead approach and has much to lose if a virus is found to be the cause) say that they had to work fast? What would they have to gain by rushing a study?
There is a lot of politics at play here, politics that may well be leading sufferers further down the garden path to ill-health. Patients in the UK are not given adequate testing or appropriate treatment. All that is offered to them is psychiatric measures. Psychiatric measures will not cure a serious NEUROLOGICAL disease (were you aware that M.E is classified as a neurological disease by the WHO and has been since 1969?) and neither will ‘rehabilitation’. You wouldn’t give a cancer sufferer CBT alone. Then why is it deemed appropriate to treat an ME/CFS sufferer this way? Yes CBT might help someone deal with the emotional problems they may have as part of a chronic illness, but that should be part of a wider programme of care and most certainly not the core treatment. The UK is in the dark ages in comparison to other countries. It’s an outrage that people are left in their beds for years, with tubes coming out of every orifice and no proper treatment other than pain relief and antidepressants. It’s a national disgrace.
Andrea Pring
12th March, 2010
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