Re: The long wait for a breakthrough in chronic fatigue syndrome
Thank you for publishing my response.
I would like to add the further information of which many readers may not be aware: that in this illness, the recommended treatment is not, in fact, actually offered to the people who most need treatment! There are no visiting services for CBT/GET, and it is fairly sure to be the case that this is because the practitioners know very well that they can't actually cure real ME with exercise and 'pull your socks up' talk, and so are very careful to avoid those who have it.
I can't think of any other recommended treatment that is routinely denied to the patients who most need it. Can you? Doesn't that strike you as odd?
I have long contested, as now also suggested by Professor Kerr, that research needs to be conducted at the level of the individual patient. It could actually be widened to a matrix of individual patients' signs and symptoms, from which researchers could extract matching sets. Individual GPs and consultants could easily compile and contribute this data from the test results (both positive and 'negative') that are already in their records.
Unfortunately, Prof Kerr's recommendation is being actively stymied, by the 'too much testing/testing is bad for you' meme that the BMJ itself is constantly spreading.
I do hope that the BMJ will now join with Prof Kerr in trying to formulate a testing regime that may, at long last, provide a way forward, for the thousands like me, who are currently trapped in their homes or their beds with no medical help from any quarter.
Rapid Response:
Re: The long wait for a breakthrough in chronic fatigue syndrome
Thank you for publishing my response.
I would like to add the further information of which many readers may not be aware: that in this illness, the recommended treatment is not, in fact, actually offered to the people who most need treatment! There are no visiting services for CBT/GET, and it is fairly sure to be the case that this is because the practitioners know very well that they can't actually cure real ME with exercise and 'pull your socks up' talk, and so are very careful to avoid those who have it.
I can't think of any other recommended treatment that is routinely denied to the patients who most need it. Can you? Doesn't that strike you as odd?
I have long contested, as now also suggested by Professor Kerr, that research needs to be conducted at the level of the individual patient. It could actually be widened to a matrix of individual patients' signs and symptoms, from which researchers could extract matching sets. Individual GPs and consultants could easily compile and contribute this data from the test results (both positive and 'negative') that are already in their records.
Unfortunately, Prof Kerr's recommendation is being actively stymied, by the 'too much testing/testing is bad for you' meme that the BMJ itself is constantly spreading.
I do hope that the BMJ will now join with Prof Kerr in trying to formulate a testing regime that may, at long last, provide a way forward, for the thousands like me, who are currently trapped in their homes or their beds with no medical help from any quarter.
Competing interests: No competing interests