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I agree with what you say @Esther12. I don't see a problem with highlighting that testing & treatments that may be available to some long covid patients (most certainly not all) has been denied ME patients for years. This isn't the fault of the newly ill though. We can lay the fault firmly at...

Hypoalgesia, hyperalgesia - how d'you objectively measure that then? How can you tell what's the right amount of pain? When healthy and getting fit or if I'd been on a long project or on holiday that interfered with my usual exercise I would expect some pain as I got back into it. However...

I reacted to a couple of pressure points only despite the rheumatologist's best efforts. He kept pressing, obviously putting effort in and asking me did it not hurt. Nope, I could feel pressure but not pain on the majority of the pressure points. Yet pain is a big factor for me.

Well, sometimes I like to imagine I've won the lottery or, better yet, recovered from ME. I still don't know exactly what that would be feel like and how I would react beyond being pleased. Why not go the whole hog and dispense with the participants and allow the researcher to simply use their...

It just occurred - this burning calves and ankles business. Yes, I'd forgotten, that irritated the heck out of me earlier this year. Then it went away. I have a feeling this happens when either my OI type issues play up especially in warm weather or I need to up my dose of levothyroxine. My...

This depends on the individual. In the UK at least. They are certainly cautious about oestrogen especially in women particularly at risk of certain side effects. Progesterone only won't cut it for some ladies. Here's a useful website for the curious - https://www.menopausematters.co.uk

I meant if the paper was published but one of the reviewers thought it shouldn't be. If the paper itself isn't published then I'm not sure there would be much point & it would be even more unfair to the author I think.

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...