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And they /yhe institutions they work for can afford to spend a lot of money in attempts avoid sharing the data so that no one other than carefully vetted friends get to analyse it.

Fantastic that they see the problems with lack of objectivity & other basic research problems Excellent that they mention the failure of authorities who should have stopped it before now. This is even better - Finally, credit where it's due and not blame. The patients doing the job of the...

I agree but I also think there should be some process to oversee the potential for bias and for over stating the claims. The fact the fact some journals & universities seem to encourage overstating results while being reluctant to release the data all add to the problem of runaway bias/self...

I was always a fairly snappy individual. If anything that's improved since I got ME - you do learn some patience. I think anyone who is tired, or tiring quickly, or starting to struggle to pay attention (even if they aren't quite aware of it yet) will be more inclined to be snappy. In my...

I think it's going to be tricky given that the initial pre course assessment was the stumbling block. In LP everyone who does the course undergoes the pre assessment. As I understand they try to establish how much you are prepared to just go along with or whether you're the type to ask awkward...

Google keeps throwing up a captcha when I try to click on the link. Can't get past it, unfortunately.

Another point which I don't believe has been mentioned yet with regard to a patient representative who is not part of the patient community - One of the issues I have observed in over 2 decades of having ME is that some ME patients who don't mix with others of different severity levels do not...

I'm still catching up with the thread, so please forgive me if this has been raised. Whose position is entrenched, here? From where I'm standing it's not ours. I don't really care whether ME is eventually classed as a psychiatric, psychological, behavioural, autoimmune, or whatever disease...

Yep. Apparently, having a baby is a cure for ME too as one junior consultant advised me. I think you can imagine my reply.

I recently had a conversation with a niece who is also qualified as a personal trainer. Apparently, the guy who came up with the acronym RICE - Rest, Ice, Compression & Elevation - now says that the Ice bit should not longer be used. Now they reckon that ice simply reduces the inflammation but...

I really hope so. It also tells us that they wouldn't have found La Crawley's LP study acceptable. I wonder what she and the powers that be at Bristol make of that?

The setting of expectations is arguably one of the most important things in research. As a techie, I have spent an awful lot of what working life ME allowed me dealing with problems caused by previous companies and their engineers not managing client expectation. If two engineers go to do the...

I had a lot of help with coping with pain from a very good physio. However, a lot of the stuff we did involved me focusing on the pain before we worked out what to do about it. She would get me to lie on her treatment table, I'd be asked to describe the pain and probably started with the...

I think the obsession with fat really didn't do anyone except the food industry any favours. To improve the taste they added salt and sugar. Instead of mashed potatoes with lots of lovely butter, pasta was a great low fat, healthy choice. I reckon appropriate amounts of fat promote being...

I am of course speaking as n=1 @Jonathan Edwards. In my own case deliberately reducing the portion of carbs from a meal or omitting them altogether and replacing with more fruit and veg worked for me. I agree I did it alongside other measures like buying salad plates that match my dinner...

The initial assessment is a fundamental part of the LP. Allegedly, it assesses if you are "ready" or "suitable" for treatment. As far as I know every LP participant has to undergo this first. It makes a nonsense of objective research because it is an ideal opportunity to cherry pick people...

I think it depends what you mean by less. Fewer calories & realistic portion sizes certainly. Mainly, I think learning to eat differently. I wasn't taught about what I should & shouldn't eat or anything about nutrition at school. It was assumed we would learn that at home. Growing up we had...

Fantastic news! I actually had to reread that paragraph 3 times to make sure it did say what I thought and not what I thought it should! Well done to everyone involved in making submissions, writing letters.etc. :thumbup:

Not to mention that many of us played sports at some time in our lives. Many of those sports are seasonal so there is a period of retraining at the start of the season. Even those who didn't play seasonal sports would have had to take time out occasionally because of exams, holidays, other...

Hmmmm.... 1. I don't think we can honestly call them scientists. Researchers, yes, although not very good ones. Doctors, yes, although again.... 2. I do agree we have entered an era of bullying researchers, if by that you mean some unscrupulous researchers use poor methodology and spun...