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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...

Could we include the harms done to ME as whole and to Long Covid as another adverse consequence of the Lightening Process, that is if Paul Garner did have input from one of the Norwegian practitioners?

Though I agree, indeed so little yet has any evidence base in relation to ‘long Covid’, we do need to be making a noise about there being no evidence for exercise being a universal panacea for post viral conditions of any sort and that pointing out people experiencing Post Exertional Malaise...

The British MEA say they have reports of people’s ME being significantly worsened following Covid 19 and this applies to most people with ME who have had Covid-19. However what I have seen gives no idea of the number of reports this is based on and what percentage report this ongoing...

This makes no sense at all as people from higher priorities than those currently being rolled out here in the UK who were missed first time round by the call out system can still get themselves added for immediate vaccination. Certainly people who are aged over 65 years who have not been...

Might it be worth taking the information re additional risks for ME as a long term neurological condition in the British ME Association draft letter (see link in the posts above) and sending it to your GP, local health service provider or MP requesting higher priority.

In the UK ME is not specifically named in the vaccination roll out priority, but theoretically should be considered for higher priority under group 6 which includes various conditions including ‘long term neurological’ conditions. With these unspecified long term neurological conditions doctors...

I am not aware of any formal reports to the Police. When Horton claimed his wife had received threats on their house phone, he seemed to avoid answering the direct question of whether or not they had reported this to the police for formal investigation. Similarly when Crawley claimed she had...

Often these phrases are euphemisms for something else. In the UK’s NHS ‘efficiency savings’ actually means ‘budget cuts’, the rationale supposedly being that if you cut people’s budgets they provide exactly the same service at less cost. As the cuts are fed down the management structure, they...

One problem evaluating supplementation is distinguishing between correcting imbalance and maintenance doses. I regularly go into B12 deficiency, and when in deficiency notice an improvement in my overall ME symptoms following a B12 injection, however subsequent injections have no subjectively...