I don't think that fits with the placebo effect, which generally leads to modest changes in self-reported measures. It's also a much bigger effect than we've seen in numerous clinical trials.
Pace explicitly tested the fear/avoidance model, no gain in fitness. Minimal in walking.
Agreed, that's too much to be placebo.
I think shows the placebo effect is pretty weak, and is more about response biased a questionnaire then real change. E.g. with diabetes, you might get a modest open (subjective) questionnaire score shift, but not a change in (objective) blood insulin or glucose levels.
Can you remind me of how somalogic works, and its potential weaknesses?
Strange to have such a big improvement over the first two weeks, apparently just from being in the trial.
Mild LC is a broad category that might have little to do with ME/CFS
1) A new Norwegian study tested more than 6000 proteins in the serum using aptamers (small pieces of DNA or RNA that can bind with specific targets such as proteins).
751 proteins showed a significant difference between ME/CFS patients and controls.
If they're right about metabolic Strain being a factor, a pre-/post exercise study would probably be expected to show this more clearly.
Yes, but only if there are more of a reasonable size. Did any prior findings replicate? I'm assuming they made appropriate corrections for 6000 comparisons.
Yes, that looked out of place to me as well.
Same old story from psychosocial researchers.
An unblinded CBT trial found modest gains in the subjective outcome of fatigue. Which is almost likely bias. They measured physical activity with wearables, but failed to publish the results, later acknowledging no gains.
So no evidence CBT works.
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.
Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
The start of my illness, back in 1996 – the UK medical Royal colleges wrote a report with similar recommendations. I had assumed that they would do a good job - they were doctors in Royal colleges. 30 years on, we are still in the same barren place.
1) "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK and patient reports of iatrogenic harm, the RACGP guideline [..] should be withdrawn immediately."
Which is a lousy definition of PEM. Where are the disease controls, such as MS and rheumatoid arthritis – I suspect they would have a significant proportion meeting these criteria.
Maybe I've misunderstood your structure, but it looks to me like you have a director of income who doesn't have a department and allocates the funds elsewhere. Can you clarify?
!!!
1) In his interview with David Tuller, Prof Jonathan Edwards gives some background on his open letter that criticises the British Association of Clinicians in ME/CFS (BACME).
The discussion is about a change from rehabilitation to long-term care by physicians.
I was encouraged that this wasn't trying to champion questionable science, but instead admitting ignorance and focusing on the need for good answers.
I was encouraged that this wasn't trying to champion questionable science, but instead admitting ignorance and focusing on the need for good answers.
Great to see this. Should be interesting.
BBC Radio 4
Tuesday February 24th at 9.30am
Inside Health:
“Is the tide turning on ME research”? (28 minutes)
www.bbc.co.uk/programmes/m...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1) Prof. Jonathan Edwards, Michelle Bull (physiotherapist) and Joan Crawford (psychologist) have written a
open letter to the British Association of Clinicians in ME/CFS (BACME).
They argue that new BACME guidance has "no evidence base and will perpetuate outdated practices"
Very true
More accurate, but I'm not sure many sub editors would allow disenfranchisement in a headline..,
Yes, there was something for the desperate to hang onto, and I am grateful.
Thanks. I agree that the 50% figure is unreliable. I'm not sure how reliable the 20% figure is either eg the ONS figure uses a very broad implementation of LC. I'm not sure the long Covid field has got a robust case definition yet: Hard to estimate the rate of ME/CFS without one.
Do you have a link to the Scheibenbogen 20% figure ?
It is, but I think it's very important the field tries to replicate such findings. Otherwise, we end up with lots of promising results pointing in different directions, and no obvious way forward
