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Thanks @Trish. More reading. Author Nemat - Gorgani sounds familiar. OMF?? edit: https://www.omf.ngo/mohsen-nemat-gorgani/ ( Nemat - Gorgani was leading the work on red blood cells. )

"Connecting the Dots Between ME/CFS, HSD/hEDS, Abnormal Fascia, Lymphatic and Glymphatic System Impairment, and Craniocervical Instability". Lubell Jeffrey Discussion above has jumped straight to Craniocervical instability very fast ( not read) but I am more interested in the other conditions...

There are difficult choices and trade-offs to be made in many circumstances with equipment I find. My first equipment choice was a luggie scooter, a total and expensive mistake. It was demonstrated in our house and got full marks on being able to handle a tight corner from the dining room into...

I hope you are soon able to use your energy to be outside in your wheelchair @Evergreen. One thing I have noticed is that I need to have sufficient energy to concentrate fully when driving my wheelchair. I consider it very easy to drive and manoevre in all ways. It rotates on the spot and...

So calming to read of the coming to terms with positives of a PEM bound life. I kept finding words and comments I could relate to. I am glad I read it because while the losses are acknowledged, so is the benefit of having to make choices and what it teaches. I could relate to that. I'm not...

Glad that you are content you made the right decision @Evergreen and hope that by the time winter ends, you have your chair adjusted to your capacities, but mostly that your ME is giving you a break so that you can enjoy outside. I love being outside even though excursions have been few and far...

Thank you @MeSci for copies of the correspondence and for responding so thoroughly to Caroline Lucas. I hope that Sian Berry learns of the concerns of many in the ME community about the Sussex and Kent ME/CFS society. If we have a Brighton Pavillion constituency member, hopefully s/he might...

I seem to remember @MeSci writing to Caroline Lucas who I see from the info posted above was Sian Berry's predecessor as Green MP for Brighton Pavillion expressing concerns about the Sussex and Kent ME/CFS Society. Have I remembered this correctly @MeSci. I cannot remember if there was any...

Who briefed her at Action for ME?

I wish my natural sleep would return! I am suffering severe insomnia which is exacerbating exhaustion and fatigue and maybe the comorbidities I have. I'm not actually sure that I have a propensity for natural sleep. By the time I was 3, my mother had me see a paediatrician and requested sleep...

Yes. I take your point that this has been ignored and misrepresented for years and it has been argued that quality applications are not coming forward which is why so little is approved for ME. Of course there never will be applications if young scientists are being advised not to go into ME...

Should the next step be, since it is not already being done, to ask for a comparative review of the level of funding for research into ME/CFS compared to other illnesses? Tessa Munt made some good points with comparisons of how funding is spent in her Westminster Hall speech. 60p per person...

"The workforce article is good, but very repetitive." @Trish That was my view too. I couldn't quite believe that the person who wrote the first where every word was balanced, nuanced and calibrated, wrote the second which seemed based round a single issue of not being allowed to maintain a job...

Thank you for posting this @SNT Gatchaman. It describes it so perfectly. " Character failure " : that touched a nerve. "The brutal truth is this: living with PEM means making impossible choices every single day. Work or social life. Basic functioning or relationships. Today’s activity or...

I watched the debate live yesterday and, thinking back to the last Westminster Hall debate in I think, 2018, was encouraged that the level of interest and knowledge from MPs felt more substantial and genuine. The commitment to moving things on felt sincere. I was concerned that the Minister...

Yes, this is the same document I found loaded onto the Sutton hospital website (post #127). They are both dated Aug 21, which is just after the Nice guidelines were due to be released, but were delayed by the RCP kerfuffle, eventually being released late in Oct 2021. So the Bacme material was...

I found this document which includes Bacme's views of the biological basis of ME ( which seems to be focussed on what they call dysregulation) on a local hospital website earlier today ( edit: yesterday) but my brain fog/ cognitive issues are currently so bad that I've only just refound it...

This is an article from the Journal of Endocrinology about mounjaro ( tirzepatide) and lipoedema. I will add a link to it on the mounjaro thread where lipoedema has also been raised. It's just a case report, needs replication etc. It is arguing that tirzepatide targets the inflammatory component...

This may be what my GP was referring to. From the Independent- "Eli Lilly and Company announced promising results for its next-generation weight-loss drug Thursday, with patients losing up to 20.1 percent of their body weight on eloralintide. The once-weekly amylin analog injection could be an...