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But the name: LIGHTNING process. It sounds religious-esoterical to me. Alone this makes LP very uninteresting for me, and I didn't even care to check about it were it not for clinical trials about it. Sometimes it feels like they think "crap science for a crap disease".

So this is advertisement?

I can't believe that, after all, there is a GET trial again, this time they are destroying childrens' lives. This really touches me in a negative sense. :( It's incredible. Can't there nothing be done to stop this lunacy?

Well, times are changing. No playing or going outside today? Or does Mrs Crawley not consider that as part of childhood?

Maybe they offer it off-label for private payers :D You know, "science has shown it can cure you"...and desperate people will believe...

Haha :rofl: recovering despite getting worse - welcome to PACE's World! Edit: This manual shows they have no knowledge about sports medicine and how to train correctly. An athlete is NEVER told to ignore physical signs that seem uncommon to him. Regeneration and rest are an important part of...

There is something called exercise-induced anaphylaxis. Never heard of it until recently. So one really has to dismiss the belief that exercise is always helpful. (Say I - and I am passionate about exercise. :) )

I can't find that website. Can you give a link?

Actually my impression is his answers were listened to, people thought about them, took them seriously and replied. That's more than any person with ME has gotten from him. And it's more than he did - because my feeling was he's making a bit fun of the people who engaged with the discussion...

Reminds me of Stephen Kings' "It", where the clown lured the children with baloons...

Thank you @Esther12 Indeed. Thanks @Trish. Indeed very interesting!

At least every DG member should know this, not just a few selected ones.

I understood this in the first place. There are ways to solve that "problem". I won't list them here. I don't feel it is right due to several reasons: I don't merely trust for good and well-known reasons. ME has a certain past, and patient organisations played a role in it, not always...

It could be possible that I can use these testimonials in court. I'm collecting lots of stuff, you never know if it can be useful.

This is such a relief to know. THANK YOU!

@Esther12, does this mean Action for ME helped the DWP in establishing their benefits-denial-process to ME? It doesn't entirely sound like that, but I see how Action for ME's partly difficult statements could be used for that.

This picture is just wonderful. I can absolutely relate to it and it feels very striking.

Again, I have mixed feelings about Komaroff.

Exactly. :D I have accepted in part that that's how it is. I think it is stupid not to act foresightedly, but that's obviously how it is with doctors. One doctor said to me he doesn't act "prophetic" (meaning here "foresighted"). So that's how they view it - as "prophetic". I can't change it...

I am very sceptical regarding this doctors' portal. I do appreciate an information portal for doctors and I do see the chances and pros. BUT. We all have experienced very much when it comes to ME. A good proportion of mistrust is the result. Neither patients nor carers nor members have access...