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Ah, I see, I am looking on my tablet.

@Docsimsim, I have looked on Afme under my mum’s account who is not banned (they banned me too for some very innocuous comment I made a couple of years back) and I can see no search option.

@Sasha, I wasn’t thinking of the comment you shared again. I hadn’t noticed it until you shared it again. It was the comment on the first page, “They've gotten a lot of things very, very wrong when it comes to ME/CFS research, but they aren't evil and they probably really do want to help.” I...

Fair point that S4ME has no official status and is a talking shop by and large, although they submit reports to such things as the NIH Common Data Elements initiative and I presume will do similar things in the future. My main concern is when I read comments on here such as, paraphrasing, ‘I am...

@Trish. I know you have asked Slyslaint and I am sure they will answer, but my answer would be on the lines of what Slysaint has already mentioned. Afme could align themselves with any successful S4ME initiative and spin it to their advantage, even if they work privately against the general aims...

Aside from having Afme as a member here, I truly do not believe Afme since the 1990’s when they decided to hitch their wagon to the bps lot have they shown they wish to help ME patients. If they did, they would have a long time ago listened to the chorus of voices from people with ME saying the...

Thanks @Melanie. Really need to stop typing today but will try and come back to this replying properly.

Thanks Jo, all clear now. Sympathies about cognitive problems, am the same hence many questions!

Thanks @Jo Best for the clarification, understand now :) One more thing, you write: ‘I don't believe for a second that ME is a functional disorder so I think that time and money spent on studies to test this hypothesis is wasted.‘ I agree with you on both counts. Yet earlier in the thread...

@Jo Best, can you clarify this please, as am a bit confused about what you are trying to say here. If someone like Harrison from the outset is approaching ME as a functional disorder then how can he be lured into the bps trap, as a functional disorder is part of the bps model? I could be...

Last night after Jonathan Edwards kindly replied to my question on the Harrison/PEM study, I felt initially a little reassured, but standing back and thinking about it more I still think there is much to go wrong as some of these people - even if Harrison is more nuanced and not trying to...

Thank you @Jonathan Edwards

Thank you @Jonathan Edwards, that is a really helpful and encouraging reply about Neil Harrison. When you say you read an abstract of Mark Edwards and was not impressed with his theorising, was the theorising involved particularly about ME or just something else?

@Jonathan Edwards, may I ask you about the Mark J Edwards/Harrison neuroimaging PEM study? As Dr Neil Harrison has now joined the CMRC board, scrutiny of his work in ME seems particularly important. In 2015 you were enthusiastic about it and said it was a good study. In light of that PEM study...

Sorry for going off topic here but @Melanie can I ask you a question about the criteria issue with the NIH study as I am still confused about it. Don’t the participants have to meet all those criteria, not just one? I am not sure whether you are suggesting some of the 40 patients may meet...

Totally agree.

Glad EC is stepping down, but presume Fitnet still ongoing and of course she heads CFS Bath clinic. Like Chris Ponting who seems to grasp ME patients have been shafted. As others have commented the new member, Dr Neil Harrison, concerns me. He is one of the investigators of that ongoing MRC...

I am severely affected - bedridden 24/7, can mobilise on to my chemical toilet at the end of my bed but no further. However, I am not as severely affected as others who are bedridden - as I experienced for 16 months 13 years go - as I can type a little most days, watch a little tv, have...

@Paul Watton, do you mean separated into two patient groups, one with fatigue focused PEM and one with severe PESF, or that both types of PEM can occur in a patient? Many thanks.

Done.