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What i'm hearing you say (in layman's terms) is that in the absence of any scientifically proven aetiology, is there any advice that physicians/med professionals can give to the severely affected/their carers, (or indeed that can be given to the medics themselves about the best ways to care for...

This. And i find it problematic that the more you desperate you get to find help, the more you try to help the doctor figure out a diagnosis by bringing up the slightest thing that 'might' be useful information, therefore you end up listing more & more symptoms/sensations that seem even...

This is all completely beyond me but i wanted to say thank you & well done for all the hard work involved in obtaining it & sorting through it.

Well done @Hutan great letter! & @Carolyn Wilshire thank you for talking to your colleagues in this wonderful way. Great to see a psychologist making sense. With your permission i would like to copy it & print it out to give to a psychotherapist i may meet with to see if they can give me some...

My experiences are the same as @Trish 's OP. And this thread is fascinating, I always feel so grateful to you @Jonathan Edwards as you have obviously really listened to the experiences of patients - ie trying to understand what it's really like before coming up with theories that cant fit -...

Brilliant video well done. It's the best advocacy video i've ever watched.

Caffeine works quite well for me, but, as you describe, it makes it almost impossible to pace & therefore i always overdo it & pay for it badly afterwards, so i just use it for emergencies only when circumstances really require it. I'm sure other stimulants would likely work for me as i feel...

The 'like' button was insufficient for how much i agree with this.

Thanks for that @Cinders66 How fascinating that a tranquilizer would help, i've always shied away from anything that would be calming/sedating etc, pharmaceutical or otherwise, because at my worst i feel so sedated I cant move or think so it always felt counter intuitive to take anything...

The article says that clonazepam has been 'shown to help' pwME in terms of their cognitive ability... is that accurate? I'm not aware of it at all. Isnt it a sedative? it's hard to imagine how a sedative would improve cognitive function... I describe my cognitive function as being 'sedated'...

From the piece @chrisb found I cant tell if PBM is woo or a genuine thing? Although to be fair i not up to reading it all. Wish Natalie well though. ETA - to clarify that my response was to chrisb's find, not the mirror article.

Both very good points. Thank you for pointing that out @Robert 1973 i would never want to imply that.

All very valid points. But i do hope he will apply them in exactly the same way to the next BPS study that the SMC want to promote - MAGENTA perhaps. If this type of rigour had been applied to PACE et al we wouldnt be in the mess we are now in would we. So yes I'm glad he is pointing out these...

Yes, it would be good to check against MDD & anxiety as well, because we don't know whether this is an as-yet-unknown effect of emotional distress on cells. ETA just to clarify - i dont think ME is in any way a result of 'emotional distress', i'm just saying that it needs ruling out in the...

Yes i said MS... i was saying to test sedentary & MDD as well as other illnesses like MS. I wasnt meaning not to test MS etc, just that even if it does turn out that people with other conditions have this same result, then it still indicates that pwME do actually have something biologically...

My bolding I can see that even if, for example they tested the blood of several different illnesses - eg MS, RA, Liver disease & found the same results, then it doesn't matter so much - because as Ron Davis says - it's showing that pwME are not healthy. So surely the crucial thing is to...

I find it rather hypocritical for SW to complain about the lack of comparison with other fatiguing conditons... since i never saw him or any of the other 'unhelpful beliefs' fanclub do any study where they compared results with other fatiguing conditions... which is no surprise,since their...

I dont know about any of this, i'm troubled by Prof @Jonathan Edwards' comments so i'm not getting excited. in the independent article oh well no need to worry then... CBT will address this overreaction & stop those silly cells from catastrophising

Awesome news, just wonderful. :) What a relief to have you in our corner for another year @dave30th

@Arnie Pye @BruceInOz thanks so much for the tips re twitter