I have not seen this tweet but a physio in a local ME group I belong to has written of a few of them getting together. I’ll send her this link.
Somewhere in this correspondence ( scanned quickly), Tovey refers to discussing this issue with ‘ Carla’, the new editor in chief. Since nothing...
Thanks @Sly Saint .
New Editor- in - Chief has been in place since June 1st? Am I right? What is her view? ( Hope I’ve remembered correctly that it is a ‘she’. Don’t...
Item 4.2 about psychological interventions is very concerning. 4.2 Dr Charles Shepherd said that he and Dr Willy Weir were on the NICE Guideline...
Ron Davis talks about ME patients having the symptoms of Mast Cell Activation in the piece above, and that they can be treated. Is anyone having...
@dangermouse I know how difficult it can be to leave the house for a medical appointment when feeling ill. That has happened to me twice...
Really odd @arewenearlythereyet . My memory is better than Mr B’s despite my issue that hasn’t recurred. So he decided to consult our GP who...
About 30 mins long. Really good discussion. Wise. Seems to summarise the history of ME. Felt quite emotional but that may have been me today.
Has the new editor in chief made any statements about this? Where is she based? I think the job advert said it didn’t necessarily have to be London.
Is this the new category of EDS that has been diagnosed making 14 categories in total? All except one, hEDS, have genetic markers, and I was told...
Well done @mariovitali. Great news. Thank you for your work. Just to say in case it’s pertinent to what you are doing that I too have begun to...
Both of these shared to a local group.
Is there any point in trying to involve Carol Monaghan in this, or at least in more details of the argument that ME has not been allocated...
Thank you @wigglethemouse . Certainly to be read tomorrow.
@Barry I am seeing a geneticist on Fri and the referring Prof suggested my illnesses including ME, hypermobility +others may be part of a...
@Dechi - yes, my doctor wanted me at 4.5 when I saw him in early May because he said that’s where the best results lie ( close to 5 so our doctors...
Thanks @Dancer. I hope i’ll be able to get a prescription for either the sublingual drops or cream, both of which are available at the pharmacy in...
Have posted my experiences on the other LDN thread. Basically I managed 6 weeks at 2.0 titrated up from 0.5. When I moved up to 2.5, I had severe...
Reporting back on LDN. Restarted this week after a 2 week break to let my stomach settle down. During that 2 weeks had lab results back which...
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