Search results

We asked around at our early ME groups but no one drank diet cola A few did drink a lot of ordinary cola and said that they fainted less. This was before we knew about pots. It comes up as a question whenever one of those aspartame emails does the rounds in the (relatively) newer groups. Some...

Been going for a year or two I think? Should hopefully have a few by now

Lucibee, There is an Australian maybe Physiotherapist ? who comes comes out of the woodwork every now and then and claims to have an early model of treating ME or CFS with exercise. As an idea, I wonder how much Dr Lloyd may have had with propagating his work and given that Lloyd was at some...

Is this a finding that is also seen in clinical depression? (other wise I'm not sure why anyone would even think of that)

What do you have in mind? I genuinely can't see any real advantage to uniting with other badly treated patients. We've had a lot of this bad and damaging publicity (in many different ways over decades) and I genuinely can't see a way of using to our advantage. Hope someone can.

Does anyone know how people were recruited for this? It turned out to be a scam and people were used. I'm wondering if we need to adopt an approach like "financial scams" in our groups so that if people are approached they will be aware that this can happen. Guessing that people were targeted...

Yes, I met Dr Simpson when he visited a London ME support group in the 90's. His work was on the shape of the red blood cell.He visited a number of UK group and gave us a blood testing kit which some of us were able to get a sample into and send back off to him in New Zealand. This report...

Moderator note - this post has been copied across from this thread. Yes, I met Dr Simpson when he visited a London ME support group in the 90's. His work was on the shape of the red blood cell.He visited a number of UK group and gave us a blood testing kit which some of us were able to get a...

Binkie, I think Yvette Cooper MP said she has Hughes Syndrome a few years ago and I can't remember if that a different diagnosis or if she thought was related to her CFS. There's been quite a lot of discussion on blood and CFS for many years but it tends to go in and out of fashion. There used...

The reference given for that quote was Appendix B of the recent NICE surveillance report "Of the approximately 300 pieces of evidence highlighted to NICE by stakeholders during the consultation, the following 13 met criteria to be included in the surveillance review. Any potential impact on the...

I can sleep through the night but I don't feel any better for it. It might be an individual thing. It's how I feel when I wake up that is the problem. Even after 8/9 hours sleep I feel wretched. Something paradoxical can occur as well. A shorter sleep overnight or a bad interrupted sleep or...

The people who took part in this seem to have been "used" to demonstrate someones flaky ideas

I remember David Baddiel (UK "comedian") saying something like this in the press along the lines of "why don't people with CFS just shut up and admit that they have depression". It was in the context of stigma.

He could be referring to attempts to change this since 1969 maybe? "Issues have arisen with the classification of the term “CFS” in the U.K as well. The U.K.’s WHO Collaborating Centre, at Kings College in London, categorized CFS as a mental illness equivalent to neurasthenia in the 2001 U.K...

Not that I am aware of. I met older people when I was in London who had ME but the first society that I ever heard of was the ME association. Their web page says they started in 1976. There may have been an informal group based around the north London and Royal Free outbreaks but if it went any...

I wonder if this is the "interest only" type of mortgage which got them into this mess? When the loan matured they had not paid off any of the capital. This seems very common in London. House prices were rising and some people found that the only way they could get a mortgage and afford the...

For what reason though? It's private, not NHS.

We were all a happy, healthy family but none of us were particularly sporting. The extended family doesn't tend to watch or play much in the way of sports. We did have a long walk each day to school and some of it was very hilly. Went out walking with friends after school as well. As I child I...

It's the being "grateful for crumbs" response. Some patients have no one who cares how they are or will listen in detail. Maybe they don't have day to day problems on obtaining care or an income or housing or food. They need someone to listen to them. The therapist says that apart from CBT. GE...

From one conversation with a medical doctor (hospital appointment after one of the articles claiming death threats) it's further split into "good militant" patients and "bad militant" patients. People with HIV/AIDS and their supporters were OK as their situation was "more serious" and "they...