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Gosh that's bad. I had picked up over the years that there were some problems with Vallings, despite her being treated by some ME/CFS organisations and clinicians as an international expert. That section Hutan quoted on pacing up and recovery is such a damaging fairy story.

Mild for years with dips into severe or briefly very severe when crashed. Gradual decline to severe over decades.

Here he goes again setting up a string of straw man arguments so he can say they are wrong so he must be right. How does this crap get taken seriously. His arguments are so weak.

I have no idea why someone with no medical or scientific training is pontificating on this topic.

Exploring the app a bit further, I tapped the 'Report a crash' button. It gives 3 options to choose from: Fatigue crash: Sudden overwhelming tiredness Energy crash: Ran out of energy mid-day Post-exertional malaise: Worsened symptoms after activity. So it seems they equate fatigue with...

I don't recall any explanation of what they mean by fatigue, @Kitty. Since it's a generic app for any fatiguing condition, I doubt they have any idea about different types. And since participants are only compared with themselves, we can interpret it however we like. There is a separate button...

Go to the website linked in the opening post on this thread.

I received the email today and have installed the app. The email came with an attached 23 page document with the instructions to read it first. I skimmed it and went ahead. It connected to my Fitbit successfully and I've filled in my first evening checkin, which consists of sliders 0 to100 each...

No, it's not an S4ME care plan, it just uses with my permission a hypothetical case example I suggested. They have changed it a bit. The structure is based on NICE. I'll leave it to John Lobb to say any more about where it might be used.

There was criticism a while back of a care and support plan designed by a clinician from BACME. I had a look at the guidance on care and support plans in the NICE guideline and wrote a hypothetical example of a care plan based on the NICE headings about a patient I called Fred and posted it on...

Apart from venturing too far into biomedical explanations in one section, I think that's a very good clear explanation of the reasons for using the name ME/CFS, and that CFS and ME are not different conditions.

Some probably pointless reflections on the use of the word 'baseline' in the question. Does any of us who is never asymptomatic really have a baseline? What if our lives were such that we could totally avoid triggers? Could we be asymptomatic too? Is the baseline about symptoms, or exertion...

Me too. I've split it in the thread title.

Wecome @Robius. Apologies for my rather dismissive initial comment on your website project. I'm pleased you see you engaging so constructively here.

I took a quick look at the site's introduction. It seems like his idea of assessing whether a research paper is any good is by asking AI. I can't see the point.

Definite 'no' from me. I haven't had a moment without any ME/CFS symptoms in 36 years. Always all my muscles aching or in pain, always rapid muscle fatigability accompanied by increasing pain. Always OI, always feel generally unwell.

This looks like a Cochrane type of exercise. I notice Glasziou is involved, which doesn't bode well.

Are these Dr Gold's hypotheses or yours, @Natalie? The thing that strikes me most is how weak and unevidenced each of these items on the list is. The hypermobility connection has not been established as existing for ME/CFS, with no large scale epidemiology studies. All the studies I have seen...

Still the assumption that rehab is helpful for all, just needing individualised treatment for those with PEM. And still the assumption that there is such a thing as safe progression, which sounds to me like pacing up, flexible increments etc.

So maybe clinics should stop using tick box scoring surveys of patient satisfaction, and ask patients to provide written feedback in their own words instead.