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A tangent, but fresh air cures were a big thing here in the UK too: hospitals with extensive verandas where the beds could be wheeled out, even fresh air schools with classrooms with only three walls. When my mother was a child in the 1930s the next door neighbours’ young daughter had TB, so...

Though many accept this, and I am more than twenty five years out of date, do we have evidence that rehabilitation does facilitate improved function rather that just reflecting spontaneous improvement that would have happened any way.

In general the cognitive issues we see in ME/CFS are non specific, relating to things like digit span, memory deficits, information processing load, attention span, word finding difficulties, not necessitating any focal damage involving loss of specific brain cells or white matter. I would argue...

Interesting Wessely cited the limited ill health outcomes from an 1993 oil spill off Shetland, claiming better public health PR and ‘dour Gaelic stoicism*’ there supported his psychosomatic interpretation of the Camelford situation, ignoring the fact that poison in the water supply might be...

I could not get the above link to the David & Wesseley (1995) article to work, but this shorter form got me to the article - https://www.simonwessely.com/Downloads/Publications/Other_p/camelford.pdf [edited to correct typos]

I strongly agree, the available evidence, albeit limited, suggests that closing the existing specialist clinics could actually result in better outcomes for people with ME/CFS.

My work was surprisingly supportive given I previously would not have rated my most immediate managers. They had supported me going half time, working three days a week for five weeks and having every sixth week off as time in lieu. Though over time they were getting irritated by the sixth week...

Published evaluation of the outcomes of the British specialist services, though predating the new NICE guidelines, found a decrease in hours worked and an increase in benefits claimed following treatment from these services. This suggests they failed as services providing rehabilitation, but...

I wondered about Rhonda Knight, listed as Patient Representative in the contributors. BACME say this: She also seems involved in ‘Mindfulness for fatigue’ Interestingly the Mindfulness for Fatigue site’s links/resources are only the Bristol ME/CFS service, BACME, BACME’s ‘An Introduction to...

‘We don’t understand at all what underlies a range of symptoms so we will collectively invent a narrative that makes clinicians feel more comfortable and gaslight patients so they are more amenable to being fed our psycho and bio neuro babble.’ What is so wrong about admitting when we just...

@Andy, thank you for posting I had thought I should read up on this but not got round to tracking the reference.

Pacing up is an approach that is central to rehabilitation. I suspect it is so basic a building block of most therapists and clinicians’ understanding that it rarely occurs to any that it needs any justification. Central to this is establishing what the patient is able to do then encouraging...

To be fair any medical staff and their representatives claims against their employers for damages is a specific legal issue independent of the government and the NHS’s response to the overall situation in relation to Long Covid. Specific groups may have specific legal claims for damages against...

Personally, given ME/CFS is a place holder until we have better understanding of the aetiology, I have no problem with charities and organisations using just ME though even this may seem contradictory. I see arguing about the name without further knowledge unproductive, though obviously...

I would have thought the biggest ‘barrier to treatment’ is that there are no evidenced treatments. However if by treatment they mean appropriate symptom management that is a different issue, though how many doctors or other clinicians are out there that have any understanding of how to do this.

The deadline for this petition is 30/12/25, meaning this has already been running for some four months. A key point for Parliamentary petitions is to get other groups to take them up and to push on publicity.

Doctors need to be aware that there is so much misinformation out there, that everyone is struggling to make sense of something that, given our current knowledge, does not make sense. Their job is not to be judgmental of unevidenced patient beliefs, many of which, as has already been said...

I think it is surprisingly difficult to describe our symptoms in purely neutral terms, independent of any theoretical constructs, this is illustrated very well when we try to discuss symptomatology here. So it is unsurprising that ‘patients’ latch on to any explanation offered by clinicians no...

Isn’t the Leeds inpatient unit still open, just not taking referrals from out of district?

Great news @dave30th has reached the target and we are keeping him on the job for a little more!