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No. Ive just tried and it's not loading for me at the moment either. Could just be server maintenance or something has taken it offline. Try again in a bit?

Yes. I agree. It's the whole establishment pleasing, better to be in the tent than out of it philosophy. It hasn't worked in the two decades Ive been ill and I am fed up to the back teeth with it.

I dont know. It may be it was her intent to give that impression or it may be that she was so busy being careful, trying to speak while actually saying as little as possible, that she gave the wrong impression. To be honest, she struck me as a person trying to keep everyone happy, especially...

I agree it would be easy to get that impression and I have no doubt that many will, but she chose her words very, very carefully.

I disagree with this. I believe she very carefully chose her words in such a way that, although you could get that impression, she didn't actually blame patients.

15:40 on a break now. I've sent in a text, but don't know if they're going to come back to ME. Edited - have to stop listening for now. I find radio/sound very difficult.

With reference to Gary's comment about sleep - At different times in the course of the illness I have needed to do certain things and sleep during the day is something I've often needed. At one point I remembered being challenged about this in a benefits assessment - if it doesn't make you...

I wonder about Gary's view - whether he is seeing opening the door for others to make /raise the points. His own approach was quite softly, softly but when Anne (?) called in and spoke about PACE there seemed some agreement that I think came from him.

I think Julia Newton was perched very carefully on a high fence there. She said (& Im paraphrasing): clinicians, researchers & patients get quite angry with each other. True, but a little ambiguous - could be read as patients getting angry with the others, but that's not actually what she said...

Somebody just texted me this link: http://www.bbc.co.uk/programmes/p05zhyp1 To Gary's piece. He's definitely getting attention!

Yes, but these guys are slippery. We've already seen NICE's circular argument that their guidelines were not based in PACE, but were in fact based on other studies. Even though those studies were not seen as good/robust enough to base their guidelines on at the time. PACE is a cornerstone of...

Crucially, some very well known and respected scientists have become aware and spoken out. It's not just patients anymore. The scientists, doctors and institutions who continue to back CBT/GET for ME/CFS will have to face the criticism of their international peers. The old school tie club...

You may well be right @Trish. I don't think it's meant nastily or that the person is lying. I don't know why it happens. I can look at certain cases of very severely ill people and clearly see that I am not as badly affected, may not be in as much pain. At the same time I can see that a more...

Does he though? He may feel that his level of functioning is more typical. It amazes me that some of the people I know at the milder end (& this is not a them vs us statement -we're all sick and we all suffer), can be a little blind to the level of disability other than their own. They know...

His TV slot wasn't bad. I did make me wonder if he is aware how severe the condition can be though? It would certainly be good to engage with him. He could do a great deal of good and he could, quite unintentionally, do a great deal of harm if he doesn't realize just how bad this can get.

I dunno... This sods just morph their ideas smoothly on and let's not forget they don't have to worry about reality, or truth etc. We do have to fight PACE or at least the philosphies that spawned it. We can't afford to ignore the MUS battle while we do it though. It strikes me that some of...

Perhaps it would be worth contacting other patient groups/organizations and clubbing together with them to fight it? ETA crossed posts with @Trish . Thanks for looking into this. It's typical isn't it? The sick and vulnerable fighting to defend themselves against the very people who are...

Well, this is where the PACE trial has been quite well designed (sarcasm), hasn't it? They deliberately asked questions in such a way as to under report PEM and failed to adequately report harms. In addition, we have lots of anecdotal evidence such as the questionnaires by AfME and MEA and...

Maybe I'm misreading/ not understanding, but his take seems to reasonable to me. My understanding of this is: The current understanding of either sudden onset or gradual onset is too simplistic and misses a lot of detail that might provide a lot more information that could lead to better & more...

I have not had any direct contact with PALs but no a couple of people who have. Based on their experience PALs basically tried to discourage them from taking action -even though one of them had a daughter harmed after an elective surgery. They supported the establishment all the way.