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I hope so, so far one of the most ridiculous treatments invented in LP still serves customers/victims.

As someone else above said they'll find a way around it. The only thing that will truly shut them up is if all their papers get thrown out for poor research standards. Which is the way I'd try to go. Get it into popular opinion that unblinded trials with subjective endgoals are shit and it's...

Not totally up-to-date, what's that bigger story?

It comes and goes for me depending on how deep in PEM I am. At the moment I'm suffering shortness of breath when lying down in the afternoon because I've overdone it with watching a show that I liked.

Some of the stuff that could be construed as positive isn't because of the people that will likely be involved. Seen how parents of children with M.E. and the children themselves have been mistreated in the past this seems to leave the door wide open for more of that. Be careful, but carry on...

Damn patients.

When I looked at it just now it used the CDC description for M.E. and the NHS description for the question are you able to improve. CDC bit: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People with ME/CFS are often not able to do their usual...

My gut is messed up and there's an almost instant result from some foods I eat to my mood. With other foods it accumulates over time. Luckily I have a diet that helps me steer clear of those.

The page should be scrapped yeah. FND and others like it as well.

Signed, this one is a lot easier than the German one to sign.

Won't happen without a complete overhaul in thinking imo. These clinics see themselves backed by the RC's who don't give a crap about any actual evidence which creates this mess. At least we have a decent NICE guideline with which we can fight back now. But chronically ill people should band...

Terrifying.

Have signed and am trying to get some others to sign.

Can't remember it all but I said something along the lines of support for local fundraising initiatives. I should've specified better though, because I mean something along the lines of basics that you have to do before you can start fundraising. And does this differ in different countries. I...

Signed. There were questions about donating and I've ran into the same problem at MEAction as I did at other venues that do fundraising for ME, the only option to donate is through creditcard. In the Netherlands we rarely use creditcard. We have our own system called "ideal" which is very handy...

Don't want to get my hopes up, but it reads like a smoking gun type scenario. I'm gonna close my pc now and wait until tomorrow to get kicked of cloud 9 ;) .

Yeah that too. But it would seem to me to be the most obvious indication. If you have a treatment that works so well you'd expect patients to get better and back to work in droves and the patient community decline rapidly. Yet it does not.

One thing that struck me about the pulsetoday comments is that there was some discontent about a largening workload for GP's where patients couldn't just be sent through to the clinics anymore. That those clinics actively hurt pwME didn't seem to be a consideration...

What strikes me that for all this talk of getting people better the patient population never seems to be getting smaller.

It might already be pointed out in following comments, but it goes further than that. They need education on what constitutes as proper science or get out of the branche entirely. Or they already know what and what doesn't constitute proper science and don't care and then they still need to get...