Search results

At least we have some reason to look there now, and there are parallel situations where ways have been found to restore normal signalling, even if so far a bit unpredictable.

No, afraid not. As clear as mud.

Merged post I have only recently registered the existence of this grouping. Sonya Chowdhury mentioned that she was involved. ForwardME are also listed on the poster. https://www.overlappingillnessalliance.org.uk/parliamentary-drop-in-summary/ I think it is problematic, which will not...

That makes it sound as if a CNS event triggered by chronic pharmacological issues led on to an ME/CFS course rather than being a feature of the ME/CFS that followed? If ME/CFS involves synaptic control somewhere around the hypothalamus, as various things might suggest, then it wouldn't be too...

That sounds like a central neurological problem, possibly motor cortex, mid brain or basal ganglia, just conceivably spinal cord. If it settled in 10 seconds there would be no structural change though. I cannot think of any recognised neurological problem that would quite fit, but vibrations or...

I have now sent the draft suggestions to the DHSC people involved, in response to an email. Unfortunately, DHSC do not want me to share their slides with the patient community. They say things are likely to change. Hopefully some things will.

How long do they last? Do they come on and cease suddenly or gradually? What is the extent of loss of movement? A detailed account in terms of questions like this usually provides a pretty good indication of the physiological level of the problem.

We have discussed this before and I tend to agree with Nightsong from a medical perspective. In medical terms paralysis is used to imply a failure of motor nerve pathway or muscle function leading to complete loss of power in an area. Complete inability to move a limb, or the whole body, can...

As far as I can see "ME/CFS Alliance" is Opal Webster-Philp, who I think is a person with ME/CFS.

Sorry, I have no idea how to do that. Does anyone know who found a contact for Pulse to get the rethink? I don't do social media.

I suspect that to the funders IACC just means Long Covid (but we had better give it classier name) plus to be inclusive and politically correct and not upset those noisy ME/CFS people, ME/CFS sort of stuff. It is a hopeless label in the context of a recent pandemic that is still giving people...

I wish I was more confident in the methodology. Asking for patients and controls on the internet is likely to be fraught with problems for studies like this. Healthy controls are likely to be 'superhealthy' individuals. If large numbers are gathered systematic confounders are very likely to...

I had a nice email from a Portuguese advocate asking me to do a discussion session following our letter to BACME.

I have asked for presentation slides to be made available here. I have had a helpful response but not an official approval yet.

Lack of research in the UK seems a strange way to put things. DecodeME is far and away the most successful piece of research in recent years. Germany seem to have been stuck in poor quality studies and dubious extrapolations to risky treatments. It is good to see funding there now but my...

That is a very encouraging video.

Technically yes, but nobody is actually going to object on this basis. People will object because they want access to drugs for which there is no simple logical extrapolation to ME/CFS. If wider leeway is allowed there is also no way to stop mindfulness and breathing exercises and acupuncture...

people have to resign from public office for things like that I believe.

I don't think Miller's antics with Garner are anything to do with the delivery plan. The Plan representatives are clear that mental health services are not to be involved (I think). They are only interested in service format. But if Miller has been approached he will presumably have approved...

But I think EndME's point is crucial here. All medics are taught in medical school not to prescribeoff-label. Not prescribing off-label is the norm for other diseases. The stipulation should elicit the mental response "sure, of course". An aspiring ME/CFS clinician is only going to be put off if...