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Mine is also absent. Although I have had a very detailed reply from a parliamentary assistant who had clearly spent quite some time looking through the parliamentary library to see what they'd been doing over last couple of years about ME in areas of benefits, getting back to work schemes and...

Totally agree with this. I managed to see my MP on 23rd March.............he listened as politely as he could manage but didn't even give me my allocated 15 mins, I only got 10. Says it all really. He asked me to send a brief summary of my experience and what I'd like him to do. This I...

I found this review very interesting with the ATP, ADP and AMP recycling plus immunology background. Zhao H, Bo C, Kang Y and Li H (2017) What Else Can CD39 Tell Us? Front. Immunol. 8:727. doi: 10.3389/fimmu.2017.00727 Abstract: As the rate-limiting enzyme in ATP/ADP–AMP–adenosine pathway...

To be honest I have limited knowledge and it's probably more accurate to say "some knowledge" and am aware this can give me a wholly biased nonsense view. Hence I see it as such and very clearly just my humble opinion in my own tin-pot way. However I do wonder now that technology is advancing...

I found this very interesting and exciting too. Citation: Loebel M, Eckey M, Sotzny F, Hahn E, Bauer S, Grabowski P, et al. (2017) Serological profiling of the EBV immune response in Chronic Fatigue Syndrome using a peptide microarray. PLoS ONE 12(6): e0179124...

:thumbup: Thanks for posting That is very interesting and very exciting. Whooopeee. One of his free access papers from 2013 is also very interesting : Rubicz R, Yolken R, Drigalenko E, Carless MA, Dyer TD, et al. (2013) A Genome-Wide Integrative Genomic Study Localizes Genetic Factors...

I got mono at 39 in 1999 and have never recovered. I wonder that perhaps it wasn't that we didn't get mono until decades after most but rather that our immune systems for whatever reason could no longer keep the EBV in check/latent state?

:thumbup:Many thanks @RuthT for the HR info. Very helpful.

Yes Invisible Woman I get worse HR values if in PEM. Although I wonder if anyone could recommend a precise and accurate wrist HR monitor for continuous use in day ? My cheap £30 one seems to show some v high rate which I'm not sure are accurate or precise. I'd love to be able to use an...

Done. :thumbup:

Yes sounds like me too. I've been doing it for years.:thumbup: I know it sounds very weird but I have found cemeteries particularly good since they are so lovely and quiet.:sneaky: There was one time when I was in The Hermitage, St Petersburg and I was making use of horizontal time on an...

Yes plainly I need to check out the facts behind my ideas more carefully.:angel: @Nancy Blake , thank you for giving me the info to help with my Vink confusion. Very useful to me.:thumbup:

I will admit to being very wary of an NLP supporter but having had a look at your site and learning that you have ME/CFS, I was willing to read a bit more and so read your link :- "ME/CFS: Ethical and Unethical Uses of NLP" I really liked this : Time to Lie Down and Fight Our metaphors about...

Yes @Londinium , I've got it wrong again.......Doh! @Hutan, yes may be that too. Perhaps it's best just to delete this whole thread so I don't embarrass myself more. Apologies I seem to have got a bit carried away and caused some confusion. Please delete thread. It is not helpful.

Apologies about that. I had only heard of Vink and it caught my eye as a massive change in tune. I'm afraid I've never heard of Gatineh, the lead author as you say. No disrespect intended, just my own ignorance.

Behav Sci (Basel). 2017 Aug 11;7(3). pii: E52. doi: 10.3390/bs7030052. FITNET's Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review. Ghatineh S1, Vink M2. Author information...

I too am very concerned about SW's apparent magical powers to remain untainted by his BPS and PACE Trial support. I was very un-nerved to see him as an author on a 2005 paper about HLAs and CFS predisposition. "Association of chronic fatigue syndrome with human leucocyte antigen class II...

Oooops sorry @Kalliope, we overlapped in our posts............you're much quicker on the draw than me.:thumbup:

I'm looking forward to seeing the written answers to Carol Monaghan's brilliant question about the fact there are still difficulties with getting the data from the PACE trial and her point that they are now being told that some of the data has been lost. She raised the point that this didn't...

@Kalliope ...that is totally brilliant.:rofl::)