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Such associations have no official role in relation to the NHS or to specific services, but rather serve as a voluntary specialist group for clinicians working in a particular field. They tend to be aimed at information sharing, networking and perhaps training or even creating voluntary...

I suspect not all sequelae will prove to be equal. Some such as long term lung damage will be related to the severity of the initial infection, but others such as those experienced by patients who meet ME/CFS diagnostic criteria represent a distinct disease process or processes that, though...

In the short term there may be a few specialist services trying to offer a relabelled form of GET, but that should be relatively easy to address. On the whole I suspect the present ideological pro exercise advocacy is not at the level of service provision but from the ‘great and the good’ of the...

I think we definitely need to know more about temperate issues in ME. I suspect both my temperature regulation and temperature sensation/awareness are off. I used to be able to cope with extremes of temperature, I have even been swimming amongst sea ice in Antarctica, but now either extreme of...

I suspect this reflects the authors’ mindset (wishful thinking) rather any long term reality for the subjects involved.

Perhaps a red herring, but there is also the cultural meme, spread in films and TV dramas, that if you have a currently untreatable condition the best course of action is to become a trial subject or look for an experimental treatment in the early stages of being developed. I have no objection...

That the period of study from baseline to follow up was on average just 285 days or some nine months, can we have any idea how representative this is of overall long term employment issues? I attempted to continue working both full time and subsequently half time in the first six or so years of...

Given the sample was selected from people attending an outpatient service, there has already been a significant preselection of subjects from the milder severity levels of CFS, presumably on the basis of a very broad definition of CFS, leaving open the question as to what percentage of their...

It is very common to have overlapping petitions on a single site or on different sites running concurrently. It can be a source of confusion, but usually one will take off more than the others. The main issue is finding ways of getting a petition shared to as many people as possible. Ideally a...

I have bought my lottery ticket and expect to initiate negotiations about endowing a Chair in the biological basis of ME/CFS next week. I hope everyone else is expecting this too, as I am sure such collective expectations will make it more likely to happen.

The authors seem to want it all ways at once: ‘rumination’ is focusing too much, but dissociation could be characterised as not focusing enough. Anything and everything could be co opted into justifying this dubious logic.

Not fully read all the manual yet, but there did not seem to be any mention at all of PEM, and given the new NICE guidelines would well on in the pipeline or even already published before this was released it seems somewhat pointed that the title refers to CFS and not ME/CFS. It continues to...

I suppose with Long Covid there are more people to get excited and also more people who have not had time to get jaded with great new potential game changers prematurely launched coming every two years or so.

An article on the new NICE guidelines and the fallout from the Royal Colleges in the Canary, see https://www.thecanary.co/opinion/2021/11/08/nices-new-me-guidelines-wont-stop-the-whitewash-of-the-disease/?fbclid=IwAR0hEP6S1EMLd1-qQdWFHpIxXOURzMnjntNUmGyuHF25n7okQKFvNr0pBxs

I greatly appreciate the work you put into sharing quotes and extracts through social media, in relation to this but also more generally.

@Trish, a useful extract. Should we be working towards an article in an appropriate journal that clarifies in terms of psychological and psycho behavioural intervention what is and what is not compatible with the new guidelines?

I vaguely remember reading a research article contrasting different forms of psychotherapy some forty five years ago. The conclusion reached was that what was important for effecting change was the therapist rather than the therapy, that there were not good and bad therapies, rather good and bad...

This would be analogous to traffic jams, that can result from structural problems, ie road works, or from traffic issues, ie the behaviour, number or type of vehicles on the road

Anything involving a base line activity is impossible for very severe ME, as any theoretical baseline is below the level of activity necessary for sustaining life, and even being a passive recipient of care can trigger serious negative consequences. Anything on pacing must allow that life and...

Do we know when this was written? Presumably well before 2000, as it talks about the Twentieth Century as this century and the the 1800s as last century. Frightening how bad ideas and misinformation can linger.