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You can measure some aspects of diabetes when not in a hypo, and you can asses lung capacity when not in a full blown asthma attack. We have more understanding of the underlying pathologies of these conditions, so direct comparisons with ME are not straight forward. People with ME who do not...

Surely the whole point of giving people advice on activity levels in the early stages is to ensure we do understand post exertional malaise. My ME would have been much easier if I had been told about PEM at least a decade before I came to understand the concept, just as management of my...

If someone is not experiencing PEM, they do not by ‘current’ definition have ME. If the video marathon runner was not experiencing PEM during her training she did not at that point have ME. If she did experience PEM during training then she was being very foolish or was very badly advised. If...

If some one is not experiencing PEM we can not say they have ME, given we are currently pushing for PEM to be necessary for an ME diagnosis. There are situations where this may be confusing, for example I had a period of what I believed to be full recovery from ME after some four or five years...

I have not read this article beyond the abstract, but going back over forty years to my undergraduate days, it would have then meant thoughts about thinking or an individual’s understanding about their own cognitive processes. Which would presumably make such hypothetical issues a prime...

I think it is more than that. This deliberated conflating of diverse conditions is empire building on behalf of their miraculous interventions of behavioural modification and psychotherapy, ie exercise and CBT. By going for ever expanding patient groupings such as the pseudo diagnosis of MUS it...

Also MS, MND, CVA, head injury, etc, etc. Chronic fatigue is one of the most ubiquitous symptoms, so it is pretty useless by itself as a diagnostic tool, and is largely irrelevant if you are looking to find specific treatments for individual conditions. Some conditions can be treated and...

Are there any studies that actually bio medically asses their subjects enable attempts to be made as to what factions might predict the various outcomes? Please not more endless inconclusive uninformative questionnaires.

Yet more bizarrely, not only are ME patients subject to the whims of doctors for treatment options, researcher recommendation is also based on whatever the whims of the individual researcher happen to be regardless of what the evidence they have gathered actually allows them to reasonably conclude.

The more severe the more pacing becomes rather prioritising, deciding which of what are normally considered daily essentials are the ones necessary for survival, decisions like how long going without washing or changing your clothes makes that more important than eating or drinking something.

Presumably some decorators would be willing to move furniture etc if paid to do so, which might mean you are paying skilled worker rates for unskilled work, though if that was the only option it would be worth considering. I have notice in my area an increase in people advertising for general...

I shared the petition on Facebook the day it came out and got little response. However I shared it again and got one comment and one share, and then interestingly I shared it for a third time yesterday and instead of annoying people I got a better response and seem to have encouraged more people...

I think the commenting facility is separate to the signing process. I signed the petition a few days ago, but now when I go back to the petition page (https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now) if I scroll down the left...

Similarly Michael Sharpe would do well to read the peer reviewed critiques of the PACE study, as he consistently fails to respond to the substantive issues they raise, rather than his preferred straw men that are completely of his own inventing.

A great article. But if the threats to researchers are to be reported, it should also be reported that they have been repeatedly been misreported or been based on hearsay or even in some cases fabrication. I do not doubt there have been intemperate things said, but to assert harassment when the...

Copied post A great article. But if the threats to researchers are to be reported, it should also be reported that they have been repeatedly been misreported or been based on hearsay or even in some cases fabrication. I do not doubt there have been intemperate things said, but to assert...

It does seem to be a feature of a number of BPS advocates, from Prof Crawley accusing people including Dr Tuller (@dave30th) of libel but never providing evidence [for] such slanders, from the standard accusation that any patient objections are the [result] of anti science vitriol, the lack of...

I seem to recollect there were statements from NICE initially saying that they were considering whether a review of the guidelines was needed and then that they consulted with the previous guidelines committee or with some members of the previous committee, who advised there was no need to...

Is this methodology inherently liable to imposing its own ‘narrative’ on what is being studied, especially given Long Covid describes a group of related phenomena making up what is likely to turn out to be a fuzzy set. Though vague about how all the patients were selected, we do know a...

“The issue is that their own evidence shows GET doesn’t work.” Indeed worth repeating many times over.