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From my personal experience of sample size N=1, the macro macrolide antibiotic Roxythromycin improved my physical and cognitive functioning a lot. I do not know how closely the two medications are related. I took it at normal dose (300mgs/day) for 12 months or so with minimal side effects...

I think the idea that psychological / behavioural methods can improve / cure people (of FMS, FND, MUS, ME/CFS, ASC etc, etc - conditions that require largely understanding and management) is seductive to everyone - patients, family, parents, clinicians. Until that gets a reality check with...

Only has time for brief look. Not read paper. Teaching parents to support children to overcome: "Some of the main anxiety problems treated with SPACE include: Separation anxiety Social anxiety Generalized anxiety Fears and phobias Panic disorder and Agoraphobia Selective mutism...

Great summary @Hutan Thanks PG comes across confused and talking outside of things he understands. Nocebo is 100% PDW. Good to hear lots of dissent and push back from across the other speakers. It doesn't help credibility if the doctors are talking about unproven evidence as if some of...

Ditto Majority of patients I see with BPD labels have highly traumatic pasts. PTSD often makes more sense. A normal response to abnormal situation(s). And undiagnosed autism can also be in the mix. I'm trying to recall if I have ever met a male patient diagnosed with BPD.

"Patients value the interpersonal style of the professional as much as the content of the intervention delivered." Blimey. That's quite an admission. Nice to be talked too nicely and with something perceived as respect, or some such. Not treatment. Achieving exactly nothing of substance or...

The FND literature is quite variable. Some include ME/CFS, fibromyalgia along with non epileptic seizures and unexplained movement disorders in one FND category. As in MUS. A big list of conditions that no one knows what is wrong. FND can mean pretty much anything to all neurologists, in some...

I had high fever aged 11 which is likely linked to tick bite and was labelled as 'summer flu' at the time. My temp was high (39/40C) and I did not recall what happened for a week or so, before it subsided and normalised. To this day I do not know why I was not hospitalised (I think my mum was...

We held our first Working Group meeting yesterday to cover background, process and setting up the smaller writing groups. We are go. :thumbup: We have large group (18 psychologists involved in writing along with 2 EbE from AfME and MEA). We have other psychologists involved later in wider...

Our group developing the ME/CFS guidance have submitted an interest in this as there will be cross over both ways :)

In 1979, when endocrinologist David Rabin was diagnosed with an incurable neurodegenerative condition, he understood only too well the pain ahead. What he didn’t anticipate was the response from his medical colleagues at Vanderbilt University School of Medicine in Tennessee, who were deeply...

Epstein–Barr virus as a potentiator of autoimmune diseases William H. Robinson, Shady Younis, …Tobias V. Lanz Show authors Nature Reviews Rheumatology (2024)Cite this article Metricsdetails Abstract The Epstein–Barr virus (EBV) is epidemiologically associated with development of autoimmune...

Her experience similar to mine. I wonder if she was misdiagnosed with ME/CFS. Reliable testing is needed for Borrelia, especially for long term infections. Nothing will change in mainstream infectious diseases circles to alter the '28 days of doxycycline will cure you' mantra. Took me 12...

Interview with her after 8am news on Today programme R4

:laugh:

Why would oxaloacetate be lower to start off with? What could drive that process? Could lower oxaloacetate have a protective effect?

CLINICAL TRIAL article Front. Neurol. Sec. Experimental Therapeutics Volume 15 - 2024 | doi: 10.3389/fneur.2024.1483876 This article is part of the Research TopicFatigue: Physiology and Pathology, Volume IIView all articles RESTORE ME: A RCT of Oxaloacetate for Improving Fatigue in Myalgic...

I have forwarded my comments along with the slides to Stephen Holgate, Nina Muirhead, Shaun Qureshi, Peter Barry and Willy Weir (who was also in the Attitudes & Education ME/CFS DHSC meetings). I have suggested a reset/restart to the process. I have a suspicion - and it's only that, that...

Stephen Holgate and Nina Muirhead. Dr Shaun Peter Qureshi and Peter Barry Co chaired meetings too for the Attitudes and Education meetings.

I received the draft approx two weeks ago with 9am deadline today comments. I have not been involved in development of the modules. I've detailed many inaccurate, unhelpful and misleading issues. Plus I do not think it is helpful for primary care. I think it will be confusing and will do...