Search results

I'm assuming that it's not a " temporarily closed" given the remaining timeframe?

No long term recovery in FITNET, same as SMC longterm . No doubt, as here, PVFS cohort who recover within 2 years. My son had PVFS and was floored and missed 18 months school. He did not have PEM. Tired - yes. De conditioned- yes. Excruciating headaches - yes. PEM - no.

From 2010 https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-7075-7-7

Bump - still no change @phil_in_bristol , can you advise if anything is happening with this? ETA tagged Phil

Sleep hygiene was a disaster - it panned out as less overall sleep and worry. Medical staff cannot understand that it will not work for everyone. Most recent appointment saw this rearing its head again with a patient blaming tone that sleep had never been addressed ( loud sigh)

Now Heumber Perry and artistic career taking off https://artplace.co/artist-works.php?artistId=336411&artist=Gilbert%20BADAF Perhaps a change in priorities Perhaps a fixed term contract Perhaps wages funding ended

Was it a fixed term appointment / is funding her salary dependent on multiple inputs ?

Given the travelling , testing and MRI timescales this would only pull in mildly affected. That differences are notable from controls is notable - if only there could be a way of enabling a comparison with moderate and severe we may have a more illuminating dataset.

From the MERUK write up it reads as though testing followed a 90mins exertion period - if delayed impact/ delayed energy availability (like PEM) is part of the illness profile would it not have been illuminating to have looked at a number of time points. 90 mins exertion may impact more...

How many unpublished trials are there for ME,? From their hypotheses/ subject matter what does this say? I had hoped Amalok Bansal' s glucocorticoid receptor trial would be published as the theory made a lot of sense from our experience. Then of course are BPS ones - non publication may...

Facts need to be communicable. We sometimes forget that because we have all read papers and discussed minutiae that others will understand/ appreciate things on the same level. They don't. Even remotely. I found that placing figures in another context helps. So making prevalence rates as a...

Is it no surprise this is from Bristol?

Negatives can be as, if not more, illuminating as positives. Often in design people know what they don't want rather than what they do. Often you can get to a solution by knowing what not to do. It's an elimination process as well as a creative one. The literature is seriously incomplete...

Definitely muscle weakness, vision issues and wordfinding ( and recently mouth working - muscles make it go " floppy"), breathing are all affected in PEM

so the house of cards continues until after the NICE review, how convenient. It would be interesting to know how many other illnesses with the same type of evidence base are under/ due for review in the next couple of years I generally find most medics have a poorer grasp of statistics and I...

This is a 3am idea for a thread, and therefore may not make sense, but I have been struck by the lack of curiosity by medical staff to look into things, either when Tests are not normal but not " bad" enough There is an unexpected response to something There are signs that something is not...

From workwell , ( and myhill) it is the type of exercise when someone is mild. GET is simply the completely wrong approach.

There seems to be a belief that GET helps some and therefore is relevant. I think diagnosis is a huge issue.

I know of one child with quite acute OCD, which came to a head after his grandfather died.They were very close and in part he attached blame to himself for not being with his grandfather at the end ( he was on a school trip) He had a referral to CAMHS, and started making progress over the...