Search results

I'd also like to see Mark VanNess present at BACME on why it's inadvisable for PWME to undergo graded exercise, given the underlying exercise physiology - and to explain, as a topic expert, why ME doesn't look remotely like deconditioning. I'd also love for a patient who is/was also a...

Are you going to add it to the calendar, @Andy?

If BACME are willing to accept non-BACME members presenting at their conference (and I assume Per Fink isn't one, not being a practitioner in Britain) then it's a conference that would seem ripe for having presentations from people such as @Jonathan Edwards and Nigel Speight and @dave30th (David...

Thanks for reformatting, @Jonathan Edwards - very interesting. Lots of shocking ignorance in BACME. Well done to those patients trying to educate them. Not the main thrust, but this comment surprised me: If that were the case, surely people such as Snell, Stevens and Vanness would have...

@Action for M.E. - Welcome to the forum. As you've said, a lot of people have a lot of issues that they'd like to raise with you. I'm glad that you're willing to engage I wonder if anyone here would be willing to collate a list of questions, to be sure that key questions don't get missed? There...

@Jonathan Edwards - that looks like a very interesting blob of feedback but I wonder if you could break it up into shorter paras for readability? A lot of PWME struggle with big blocks of text.

Not necessarily - I don't want to prejudge what they're doing. They seem to have been making some shuffling changes in recent years and I'm wondering if that's a process that's continuing. The CAA were poorly thought of for years in a way not dissimilar to AfME and then suddenly, voila! The...

Big, very interesting statement from Chris Ponting in there, including this: I didn't realise that about the Alzheimer's research (the understanding that it's microglia, not neurons, and that that knowledge comes from genetics studies). Exciting implications for ME, where we don't know what...

Thanks for telling us, Simon. This is very good news, IMO. It's clear in the US that a lot of the biomed researchers who have dedicated themselves to our cause for years (decades, in many cases) have someone that they care about who has ME. They have the purest motives and the most...

Happy to see that this doesn't involve all the stupid Facebook gubbins that one usually gets with a Facebook post but is instead some sort of elegant bloggy page with no half-screen trying to force you to sign up to FB to read things properly. And a very interesting blog post! I, for one, was...

Isn't that all the more reason to be pleased that they're here, where they don't control the ground? Wouldn't you like to put this issue to them yourself? @AfME. I agree with those who are saying that their registration looks like they've laid a placeholder. I think they intend to post at some...

I wonder if you're trying to paraphrase me here. What I actually said was this: I suspect they do think that they're helping patients. But there's a chasm between thinking you're helping and actually helping. There are probably many here who think that AfME are simply evil and out for their...

I'd forgotten that. :) Well, AfME claim to to support us, and they probably believe that they do. Let's by all means have them here to debate that. As PWME, we have serious work to do. There's a whole edifice of BPS nonsense that has done, and continues to do terrible, terrible damage. We need...

from the merged thread It may have come up in another thread but I think it deserves its own thread, @adambeyoncelowe! Often, new things crop up in long-running discussions that need flagging up in their own right. Perhaps if you add the MP's name and constituency to the title, their...

This is a forum, designed for open discussion, and especially about the science. People must make their own choices about whether they're happy being in an open forum. I don't understand what you mean by this.

I'm also all for AfME being here. The fact that they've registered in their own name suggests to me that one day, they intend to talk to us. If they'd just wanted to lurk, they didn't have to use the AfME name. We have a lot to say to them. Thus far, they don't seem to have heard a lot of it...

Just had an email to say that the petition was successful in meeting its 100,000-signature target (and is actually pushing 250,000 now): Parliament is going to debate the petition you signed – “Stop the privatisation of NHS services”. https://petition.parliament.uk/petitions/205106 The debate...

I don't have the hang of Twitter but found that if I clicked on the time-stamped (currently says 17h but that may change) at the top right of Emma Joy's post above, you can see the whole conversation. I continue to be impressed by Chris Ponting.

She's not a psychiatrist but a research psychologist, AFAIK - is that right, @Carolyn Wilshire?

We seem to be in agreement, @Melanie! :)