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There's a post on FB today saying they are closing the latest questionnaire earlier than planned because they've had so many responses - about 900. They're leaving a week for those who have started filling it in to complete it. I think it's incredibly difficult to get through to the MEA the...

Gosh, I have started reading the paper and looking at the data. This line of data stands out as a demonstration of the problems of the definiton of moderate and severe ME/CFS: SF-36 Physical functioning, mean (standard deviation) Severe ME/CFS 77.7 (18.9) Moderate ME/CFS 90.4(11.1) Long Covid...

Over the years my ME/CFS has ranged from mild and able to work part time, through moderate and able to go out a bit, to severe and housebound and mostly in bed. The number of criteria I have met has not changed. Until the Jason team recognise they have got their definitions of ME/CFS and...

Hi again, @Janet Stone. Thank you for sharing your personal story of how you came to be involved with the Jason team. It helps to understand a person's context. I absolutely accept that Lenny Jason and his colleagues are dedicated workers with unimpeachable integrity and dedication to the cause...

I had a few sessions of physio after a broken bone in my shoulder. It seemed a bit helpful to me as it encouraged me to gradually build up moving my shoulder through its full range of movement, starting with passive movement, then active, then against resistance. I have no idea, of course...

Or given the state of the world, more people can't afford to donate.

It's been a while since I looked at the DSQ questionnaire. I assume this is the latest version. https://redcap.is.depaul.edu/surveys/index.php?s=8sM6kF6dIut8XrMt It has 99 questions. I would like to understand better how the results are scored and what interpretation is placed on the scores. Is...

Welcome to the forum, @Janet Stone. Thank you for joining us. Since it's my post you're quoting, perhaps I can explain. My comments were not just a throwaway rather rude and dismissive comment coming from nowhere. We have spent years following Jason's team's work. While I really appreciate the...

It looks like Dr Nancy Doyle has PhD, I assume in psychology, and is an associate lecturer at Birkbeck College business department. So not someone who should be pontificating on ME/CFS or PEM.

I think there is a problem if pwME start asking to be tested for ME/CFS genes. It reinforces the idea of many medics that we are ignorant fantasist imagining we have a 'real' disease with a diagnostic test. It needs to be clear that the genetic information is a set of clues about predisposition...

I wonder whether that would be influenced by gender. More females than males have bendy joints, maybe more males than females like to claim they are robust and keep fit, ie aren't weak. Do you have numbers?

@Joan Crawford is a member of the British Psychological Society. I wonder whether you can do something about this misinformation, Joan.

Hi @Naomi10. Lovely to hear from you. The short answer is there are no confirmed research results that point us definitely towards any specific causes and no proven effective treatments. This sentence from a recent Science for ME fact sheet written by Prof Jonathan Edwards pretty much sums up...

BBC article: Should you really trust health advice from an AI chatbot? Quotes from the article:

Thread

She hasn't posted on the forum since 2020.

I gave up on filling in the repeats of the survey after the first time, or maybe it was the second. It didn't feel useful to me, was very lengthy, and there was no indication of how they were planning to analyse the vast mass of data. I also object strongly to the use of the word adventure for...

I've done the survey. It asks about what sort of trials you'd like to be done, practicalities of at home or at clinic, what outcome measures are useful and more.

All this abstract and the short extracts tell us is a bunch of assorted people with and without symptoms of some sort after EBV and after Covid filled in some rather random sounding questionnaires a bit differently, and the team decided to interpret the results in their own idiosyncratic way.

Gosh this thread has been busy. I haven't caught up with it all yet. I don't know which comorbidities could be considered part of ME/CFS, but if you look at lists of common symptoms of ME/CFS, GI symptoms, ranging from IBS type to inability to eat are clearly there. I think something can...