Search results

Yeah in both cases they worked as marketed, I.e. a lightning cure. I just don’t know what to make of it...can you have ME-like symptoms that can be corrected by some sort of psychological process? The reason I bring it up is that as long as these genuine stories exist the waters will continue to...

This isn’t strictly related but as we’re discussing the validity of the lightning process I thought I’d contribute this thought. There are lots of people who say they’ve benefited, even been cured by the lightning process. I know of two myself, both of whom are fit and well, and working full...

Is it possible to resign as a volunteer? Anyway, if someone has personal disagreements with something they’re free to make that known publicly...but if I remember this person also posted a number of screenshots of private conversations with ME Action, on Facebook? That seems a bit unnecessary...

This wouldn’t really happen til the debate got to the HoC. Westminster Hall debates are basically a way to put a case to a ministerial department. We will see what their response is soon...

I don’t know. I feel like being on point with word usage is actually quite important. Were the shoe on the other foot, I’m sure if we as a patient community were accused of using certain words, the first thing we’d do would be “show me the evidence we said that”. I just feel it’s important not...

While I understand where you’re coming from, the alternative is people with no energy constantly trying to advocate for themselves, which probably won’t end well.

One problem here is that I think there are some patients who do receive supportive CBT for their ME. Their seems to be wild variations between clinics as to what kind of support you receive, and a disconnect to what has been written about in former papers / PACE manual and what's actually being...

So why haven’t they, given that we’ve known about this illness for decades? This community has self-funded so many important things. But it needs the backing of some heavy hitters in order to make real progress.

To me, advocacy broadens the amount of people who become interested in the illness. That in turn leads to more funding down the line. It’s possible that this leads to a much more significant uptick in research funds down the line, but I don’t really have anything to substantiate that, it’s just...

To be honest it probably serves as a neat reminder that this forum is public and that your words will be used against you on contentious topics.

Being bombarded with @ replies on something you know very little about is at best a bit perplexing on twitter and at worst very irritating. This may have been what has happened here. No grand conspiracy, just someone who got drawn into a debate that they knew very little about and bombarded with...

While I agree, I feel like the audience for these tweets is so, so low. One would have to follow both Simon wessely and an ME patient in order to see the full discourse.

FWIW, all the people in my online support group watched it and we all had really bad responses to it. It’s a terribly bleak film, and one that I think should come with a disclaimer for any M.E. patients who are feeling remotely fragile at the time of viewing.

I think target-based fundraising always seems to have work best, in my limited experience. Give x, get y, etc. David Tuller’s crowdfund was very single-issue, on a topic that many feel emotional about, so was very successful. It’s so much more difficult when, no offence to David, your goals...

I do not have the spoons to read the full doc, so apologies if this is in there, but does it say anything about combinations of causes? I.e., in my case, I had had a really traumatic two years of my life, which then ended with two viral infections one month apart, causing my onset of ME. I...

Sigh. Why does there always have to be so much public posturing around ME activism in the UK? It would’ve taken one private email from Invest in ME to any of the individuals involved in ME action UK, or a direct message to the twitter account to air any grievances. To make such a statement in...

Am I being dense and not seeing a quote or does MS not state anywhere that “ME can be cured by counselling”? Seems foolish to tweet this at him if so.

Yes. Who if I remember correctly published his theory on stress in CFS in a pay to publish journal :laugh:

The thing is though, women are treated worse then men by healthcare systems. This has been shown clearly. The other point you mention about it turning certain people off the issue because of using the term feminist etc, well...of course, yes that’s true. But the whole point is that it can...

Why do people in the thread (@Sid, and those who liked the comment) not think that this is a good interview? I’m personally on the fence, as I think his comments about CFS are basically fine...but that he says some rubbish about other topics that makes him a bit of an unreliable narrator.