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Response to the article and statements by Kinderman: Why Psychiatric Diagnosis Matters. Despite recent claims, diagnosis in psychiatry is scientifically meaningful. https://www.psychologytoday.com/ie/blog/freud-fluoxetine/201908/why-psychiatric-diagnosis-matters

The feasibility publication of the SMILE trial writes: "The authors would like to thank Professor Jonathan Sterne who provided trial methodology advice." I wonder what kind of advice that was.

https://www.bmj.com/content/366/bmj.l4898.full?ijkey=gzAdEdyR713TWzf&keytype=ref

Thank you so much Tom!

Does anyone have a digital copy of "National Task Force on Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, Myalgic Encephalomyelitis. Bristol:Westcare: 1994." https://books.google.be/books/about/Report_from_the_National_Task_Force_on_C.html?id=dfb7uAAACAAJ&redir_esc=y

Thanks for sharing your story @Arnie Pye

I've tried to rephrase the text a little in accordance with my own view and what has been said and commented. I apologise in advance to Andy if this isn't the direction he wants it to go: Sustainable exertion limit (SEL) ME patients have a reduced sustainable exertion limit and an abnormal...

Yes. I prefer to make a distinction between the (muscle) fatiguability which is short term and PEM which is more like a payback mechanism over a couple of days. Personal note: I get this lactic acid like feeling (the feeling that you have just run a marathon) in my muscles after even minor...

Ok. I was thinking of a thread that starts with post number 8 (your text) and includes the other posts until post 19 (which is where you suggest creating another thread). The title could be something like: "working out descriptions of PEM." Perhaps you, Andy could then indicate which posts...

Ok, sorry. I might have misinterpreted. Your text, using the term SEL, was quite thought-provoking. Perhaps moderators could duplicate the posts starting with Andy's text and post them on another thread that tries to work out descriptions of PEM?

I would like to add a short note to this discussion. Because PEM is now often regarded as the most characteristic symptom of ME/CFS, debate about it and how we all experience it can be intense. If a patient describes his experience and that doesn’t match up with what others experience, he/he...

Yeah sort of. There might be some ambiguity because one could argue that PEM is not unique to ME but that it is simply a consequence of going above a persons' SEL and that this is unusual but not impossible in healthy people. For example, if they exercise and get fitter, that is because they are...

I think this is great Andy! Very well explained. Perhaps you could add after this sentence that it's not only that ME patients have a lower SEL, but that it has greater consequences if they exceed it than when healthy persons exceed their SEL. At least that's what I think is happening: ME...

It is unfortunate that the study doesn't say how many of the 97 interviewed healthcare professionals provided care for ME/CFS patients (or did I miss it somewhere?). As far as I can see, they only mention the number of trusts that they could contact: "A total of 115 NHS trusts in England were...

These were the powerful words from Karim Khan, Scientific Director of the CIHR Institute of Musculoskeletal Health & Arthritis (IMHA). I've skipped the introduction where he thanks people. He is called on the stage in minute 24 of this video. "Please permit me 20 seconds to speak as an MD with...

The GET group did a little better on the 6mwt. One possibility is that this patient group learned to push through and did more effort to increase the amount walked. Does the borg data show this - that they were doing more effort in this group or were there no significant differences between groups?

Other suggestions Collaboration with EDS and POTS research There needs to be more collaboration between ME researchers and other specialty disease research. There is symptom overlap with those who suffer from Ehlers-Danlos Syndrome, POTS, disautonomia, and other diseases. Maybe there is a...

Diagnostic criteria and questionnaires Stricter diagnostic criteria The absolutely essential first thing to advance research at the NIH and elsewhere is to stop mixing the distinct disease myalgic encephalomyelitis, ME, with various fatigue-based conditions that are not ME under the obfuscatory...

How to get more patients into studies Social media campaign to attract participants for studies I would suggest social media campaigns as outreach to locate and hear from more patients living with ME/CFS. I imagine many of us would gladly participate in order to further awareness and research...

Collecting more data Lack of longitudinal data ME/CFS also needs more up to date longitudinal data. I have been sick for 23 years, and I have no idea what this illness is doing to my body, or my prognosis.[The most compelling ME/CFS research needs] I've read accounts from several patients who...