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My understanding is that when the GMC (General Medical Council) decided not to investigate [her complaint against] the PACE authors Dr Myhill asked them what evidence this decision was based on. When the GMC refused she put in a freedom of information request which they then refused on the...

What would happen if we imposed a five year moratorium on the use of questionnaires in psycho medical research? I dream of a utopia of objective outcomes.

Given the proponents of central sensitisation fail to define exactly what is meant by this at a neurological level, for example is it that neurons’ firing threshold is lowered or their conductivity is somehow speeded up, are they doing anything more than asserting a personality type. Without...

As @Mithriel says ‘this just lists all the things that people believe are caused by central sensitisation’, but this does enable wonderfully circular research in that you can then administer the inventory to people who experience these things and ‘prove’ they have central sensitisation. These...

(Note - I have not read the article itself, so may be being unfair, however ... ... ...) I don’t understand how you can postulate a neurobiological phenomenon, but then only seek to study it using questionnaires. Where are the scans or blood tests that actually demonstrate the existence of the...

When I was still working a significant proportion of my case load were people with neurodegenerative conditions and round about the time of diagnosis it was often a fight with family and with some medical staff to ensure the patient was adequately informed of the diagnosis. Often one reason...

Thank you @Barry for putting this so clearly. I had been struggling to put the idea into words. What happens psychologically may have implications for physical health but that is not the same as saying it is directly causal of physical health issues. If someone who has a broken leg is also...

I would say memory because I have no problem attending to what I am doing. I have additional attention problems in PEM, that relate to distractions, following a thread in reading or in a TV programme or coping with background noise, but not in a quiet room with only me the phone and the phone book.

I definitely experience specific memory issues during PEM in addition to attention problems. A good example is short term memory deficits as measured by digit span. The normal digit span is 7 +/- 2. My premorbid digit span was usually 8 and my current base line is 6 or 7. However in PEM if I...

With our current knowledge the debate on naming our condition is potentially endless until we have a better medical understanding. Also because both the two preferred names have been used for quite a few years both are part of many individual patients’, researchers’ and medical professionals’...

A thought provoking way of putting things. I suspect, perhaps because of the nature of human consciousness, that many people, without even realising it, have at least some beliefs that thoughts alone can cause things to happen in the material world. It is in effect a belief in magic, that some...

Diet has changed enormously. I remember processed food increasingly appearing in the late 60s and early 70s. Until then it was a badge of shame for mothers to feed packaged and processed food to their children. I also remember in 1970 seeing a microwave for the first time. A friend’s parents...

Crawley has recently been involved in a number of studies involving children who have been treated by the Bath clinic but still have persistent ME/CFS. Presumably this significant preselection of subjects, and use of children who have had significant intervention based on the philosophy of one...

I do not use Twitter, but is it worth tweeting a link to the DeCode ME study with lots of on line support and patient involvement, saying research in ME has hardly stalled.

Could it be that this apparent publicity push from BPS advocates in relation to ME (possible timed to coincide with the new NICE guidelines) and in relation to ‘Long Covid’ may end up back firing? (Added - Though obviously the Swiss Re talk is probably just part of Prof Sharpe’s ongoing...

Obviously problematic not being able to read the actual paper but variation in ‘quality of life’ is not necessarily of itself a good indicator of what to direct your intervention at. With cancer, say if arbitrarily maximum variation in quality of life on questionnaires was linked to depression...

Though I agree with @Jonathan Edwards in principle that “The point of doing research is not to do research. It is to get useful answers.” I would also argue that in practice the way British University Departments are funded means there is also an important secondary purpose of research and that...

I had not realised that MND and Parkinson’s are still primarily diagnoses of exclusion, so they, despite being better researched, are not necessarily diagnosed by qualitatively different methods than such as we would ideally want to see for ME. Also interesting to note that the report only...

BBC Complaints page https://www.bbc.co.uk/contact/complaints You need the name, date and time of the programme you want to complain about. [Added I tried to add a link that took you to further on into the process to where you start complaining about a specific programme but that didn’t work]

An aside, but we desperately need data to call out the secondary gains nonsense. Certainly in financial terms it is highly unlikely that anyone is better off after getting ME than before. One of the extremes we hear of is people in the US living in their cars because they spent all their...