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That's horrendous, @Lou B Lou. I'm so sorry that happened to you.

That weight loss is concerning for someone with a low BMI. I hope your doctor is keeping a close eye on your weight and giving you sensible advice.

I thought one of the main aims of pilot studies was to see whether there was any sign of efficacy to inform decisions about future studies. It's clear from this pilot that there's no efficacy, so why suggest a larger trial. Surely that would just be a waste of money and everyone's efforts.

keep sharing your thoughts. I find them really interesting.

Yet again the assumption that multidisciplinary care is the best approach and will lead to improvement in practically anything. Maybe a single clinician with more expertise in pain management medication and recognition that some conditions don't as yet have effective treatments would be more useful.

I think going up a severity level, in my case from severe to moderate, with the improved symptoms and increased activity level that would involve. Being able to get up and shower and dress every day, and able to walk to a local park or visit a friend would be fantastic. This is hard to think...

It is sad, and concerning not just for him but for others he may influence and others he is insulting with his theories about determination being the key. Maybe someone should send him a link to Fred Rossi's blogs, discussed on the forum, particularly the latest one.

This is really disheartening. How can MP's be so hoodwinked by one maverick campaigner who completely misrepresents the situation with ME/CFS, leading to ongoing harm. What can we do about it. Maybe those of us with MP's from the same party (and any other parties they garner support from) send...

I've only read the abstract. Is there a problem here of correlation being interpreted as causation the wrong way around? Maybe the finishers RBC's were on an improving trajectory anyway for reasons unrelated to exercise, and whatever that other reason was enabled them to complete the exercise...

Typical overclaiming of effectiveness from this research group. Their claim is surely scuppered completely by the very high drop out rate at follow up. Especially as they admit it made no difference to the patients' FND.

I got my ill health retirement in 2004, which is before the 2007 NICE guideline. I don't know whether that helped and whether later applicants would have been turned down if they hadn't done GET.

According to our thread on him, Garner was scuba diving.

That sounds like they are gearing up to seek large funding for a much bigger trial. But what is the point when the feasiblity looks dubious, so few of those screened were eligible and measures fluctuated as much over the weeks, and the end of trial results were so weak.

Thanks, I saw it was MEA funded and couldn't find the amount. So they wasted 50 thousand pounds on getting 16 people to drink more water and eat potentially dangerous amounts of salt and wriggle their legs, and finding it made no clinically significant difference. Sigh. Why does a crappy piece...

Gosh that's a good article. I'm sorry to see Fred is so much sicker than in his previous articles. I was going to quote bits, but it's all very good and cost him six weeks of small snatches of writing, so I think it all deserves to be read by those who can.

What about the distinctiveness and urgency of ME/CFS of unknown trigger? We seem to be second class citizens yet again. It's all urgent. Just some of it has been urgent for so much longer. I welcome those with Covid induced ME/CFS to our ME/CFS community as equally in need of research and...

I was awarded ill health retirement by the UK Teachers' Pension scheme when I had to retire because of my ME/CFS getting worse. The union rep who helped with the application said they award it for ME/CFS if you've had it for at least 5 years so it's assumed permanent. That was 22 years ago. The...

I have only read the abstract. I notice the assumption that any sort of fatigue can be treated effectively by 'rehabilitation'. Yet we have no evidence from any fatiguing condition that any rehab strategy makes any difference to fatigue, apart from training people to fill in questionnaires...

To me that pretty conclusively shows the idea of drinking more water and increasing salt intake as a treatment for POTs or postural hypotension in people with ME/CFS or Long Covid is useless. The only statistically significant finding was an average across the group of a small decrease in the...

I don't understand the point of using TENS for all over body pain. I thought it was for localised pain. I have come across it prescribed for period pain and it seemed to help a bit for a while but the woman trying it found she became oversensitised to the TENS induced sensation, so it was...