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haha I posted that same song on another thread, about nonsense coming out of Solve

I dont disagree, but I was responding to the title question - asking why we dont get reviews.

Because while ever they believe it to be functional/psychosomatic there is no need for one. (From their POV I mean) it’s irrelevant what it says in NICE GL if the GPs think it’s a psych issue they would never allow practice funds to be wasted on us, Even more insidiously, they wouldn’t want to...

Yes thanks that makes sense but I can’t take it at that time unfortunately because the pain relief takes 3hrs to kick in so I have to take it 9pm, like I said it makes me feel drunk making pacing or indeed any sensible decision/self discipline, very difficult and given just reading/ listening...

It may not be relevant, but sometime around 2010/2011 ish, there was some ringfenced funding from the MRC for research for us. I remember that there was to be a study using interferon. I remember it because given my ME experince is identical to the experience of having an infection, a study...

thanks, so would it be the interferon that is (indirectly) causing the flu-like symptoms then?

I am not well enough to be able to read/study the thread & dont have a science background anyway, but am skimming, & its so heartening to watch you clever people! But can someone tell me if this summary of the ideas so far by Hutan is accurate please as not seen it confirmed

Interesting because Gabapentin 700 late afternoon & 1200 at night (for something else), makes me feel 'better than i have done all day' in terms of flu-like sensetions - ie bodily. But the fog, the drunkeness effect is terrible, very intense. & it also makes me think i can do things i cant...

Errr, so already cant get a GP appointment, not enough GPs.... so heres a good idea... lets give the ones we have, A LOT more to do. That'll help. The only people this will help is the gov't waiting list targets.

Ah, yes a very good point thank you. I'm new to smartphones & only view S4 through a laptop. I have edited my post accordingly

Wow i'd be really thrilled if a study like this could be done. Then we'd know once and for all! For those it helped we might be able to elucidate why it helped them and not others and if no benefit was shown we could all stop wasting our energy debating it. Incidentally, @Friendswithme ... Hi...

Just flagging this up for you @Aldebaran's Star just in case it'd be of interest to you :hug:

no mention of the LP? I was under the impression they said it was that that caused her recovery... oh but then it was the discovery it was really Coeliac all along. Not saying that the Rantzen's are not being truthful, just that it seems like the press are cherry picking depending on what they...

Thank you @Simbindi & @Kitty that has enebled me to come down off the ceiling somewhat!

Oh goodness, I tried not to look at the suggested reforms, but i did look. Am very scared & its unclear. I cant understand whats going to happen to me, I been on CB ESA for 12yrs no IR component. Due for reassessment Spring of 2026. Whats going to happen to me? And @Simbindi I cant read the...

Good luck! I have found that if you put them in & leave them to soften in the warmth of the ear a little while & then jiggle them in jiggling & pushing, they go in further and then form a proper seal. When i first put them in i can never get the angle right. But you'll know when they're in...

Sorry @Trish I realise you heard me say all this before, perhaps you wanted to hear from others instead :rolleyes: I have spent my energy ration now, & have a busy week so likely wont be able to come back for a while to respond to any comments

Also I can read for 20mins in silence when well rested, & on it's own will not trigger either PEM or immediate collapse/symptom increase. But I can only manage 5 mins when there is also background music, (even music i enjoy), or other low volume background sound, zero if the volume of the sound...

Well I appreciate that we dont know what PEM is biologically, but surely we know that it takes energy for the brain to process sensory input? It's all activity. Just as an aside i sometimes wish it were called PAM as it's often very low level activity rather than what we think of as exertion...

I thought i was going through & saving multi quoes, but i lost it all apart from this one of Ravn's & am now too ill now to make any sense going back up thread to get quotes & things. but I wanted to say that I am in full & enthusiasticagreement with evything @Kitty said in previous few pages...