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For a truly open peer review I believe that all reviewers should be prepared to be public signatories and also be prepared to have their comments published alongside the document. Even if the reviewer thinks the paper shouldn't be published this should be the case. If nothing else it might...

I only use the germ brain fog when talking to a fellow pwME 'cause it's quicker /feels easier to say. Otherwise it's cognitive dysfunction or impairment. I agree with @Trish in that "dysfunction" sounds less permanent. However, to me, impairment more effectively captures the level of the...

I think when you go down the path of specifying exclusions then there's a risk of creating more loopholes. There a fundamental problem in the system whereby practitioners can claim they must follow guidelines & NICE can claim the practitioner should use their own judgement. When the patient...

I think eventually this will happen. Projects like DecodeME, even if they don't provide the clues we need to come up with effective treatments immediately, will pave the path for this lady and her ilk to be hoist by their own petard.

I think in the case of paediatrics it is much worse than that @rvallee. Schools and children services won't be reading up on Cochrane. No they'll be talking to the likes of Crawley and her sidekick Phil Hammond. Child services won't bother or see the need to defend their judgements to anyone...

I agree with the above but unfortunately people also use her work to prove that what they want to believe is scientifically proven. It is a vicious circle. It may be that in some quarters things are changing but out in the wild - schools, GP surgeries & social services - she gives them all...

Nice. I think that's one of the many injustices with a diagnosis like ME where it is seen as acceptable that the medical establishment and the state can gaslight you with impunity. It leaves people very vulnerable to all sorts of other lies and manipulation in all sorts of areas of their lives...

Even then I think it's possible some might experience health problems in 10, 20 years time. Like some teens who seem to recover but then ME comes back as they hit their 30s.

:hug: @Simbindi. A lot of the people I met in the early years who were in relationships faced a similar issue - not necessarily the physical violence though. Relationships which might have otherwise survived were destroyed as the partner became part of the gaslighting campaign, sometimes...

As I liked this @Andy & I know you and others have put heart & soul along with blood sweat and tears to get this off the ground, I would like to explain why on my own behalf (not trying to put words in Esther12's mouth) I am 100% behind DecodeME and believe that whatever it tells is will in...

Eh? What have we learned? If we=patients and a handful of decent researchers who have struggles for a few crumbs of funding here and there, then a bit. Mainly what not to do. If we= everyone else then "we" have learned nothing. What's more we are in denial over the level of ignorance. The...

As an adult with ME I also tried this strictly timed management business & diary approach. I suggest that anyone suggesting this approach to others, be they children or adults, try it and follow it strictly. The reality means that you end up watching the clock constantly. First because the...

I think that would be well worth capturing. Also, perhaps, the attitude or approach patients who deteriorated or improved while under the care of the clinic were met with. It might be if you are severe and don't improve but don't deteriorate they are still supportive but if you were milder...

Okay. **picks jaw up off floor** You've got to wonder what's going on there. i don't doubt your word in the slightest but this man has gone on record endorsing stuff that is just plain wrong and harmful. Please don't think I am dismissive of your suffering @ringding but you mentioned that...

Not at all & I'm really glad to hear that your experience was positive. This is the kind of support that is badly needed. This is the issue as I see it. Not every clinic is bad & from your report this one sounds good. The snag is there are still bad ones out there. While NICE guidelines are...

£994,430......... Not even simply wasted but actively invested in making the lives of young people already disadvantaged by a great deal of suffering & discrimination worse.:cry: I'd rather see someone spend that kind of dough on shoes or handbags or something. At least it would bring someone...

Now they just need to get their heads around the fact that the apps were problematic, some users gave up because, despite complaining that many of their symptoms weren't included in the app and were too cumbersome to keep manually adding in every day, they were ignored. By the very questions...

From the quote in @Kalliope 's post above What he doesn't say is that the symptoms are usually exacerbated by the therapists fear and beliefs & not the patients. Especially, in the early years before a patient learns better they are very trusting of their doctors & have a lot of faith in...

And "pacing up". Baby steps but still very welcome to see them move in the right direction.

Yes they did some tests on that a few years back. More than the BPS crew have ever done despite claiming so many people are deconditioned and ill because of it. If the BPS crew were serious about it why didn't they do tests - take blood, MRIs and what have you as healthy volunteers...