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Hi Natalie, welcome to the forum. I have read what you posted here. I find it hard to follow an argument that jumps from one tweet to another. I don't have the energy to dig through long threads on Bluesky or X or to follow up all the linked research. If I try to summarise what I think you are...

It is all remarkably childish and boastful, isn't it. I can't imagine what they are thinking. Can I have a badge for recovering from measles, mumps and chicken pox, all before the age of 7. I must be a very superior being.

Deleting seems the sensible option. What bothers me is there could be a much better app that pwME could link to any wearable they have to track steps, heart rate etc, with easy to record symptoms, severity level and FUNCAP data, and meds to track their own data as theý choose to, to help with...

A letter to Charles Shepherd at the MEA submitted on the MEA contact form. He has asked on Facebook for feedback on it. I was looking at it again today to see whether I could face trying to put together a coherent critique and decided not to bother, unless it has new materials added. As far as...

Published 2024 Long COVID Clinical Severity Types Based on Symptoms andFunctional Disability: A Longitudinal Evaluation Manoj Sivan 1,2,3,* , Adam B. Smith 4,5, Thomas Osborne 1, Madeline Goodwin 1, Román Rocha Lawrence 1,6,Sareeta Baley 7, Paul Williams 8, Cassie Lee 9, Helen Davies 10...

It sounds like a worthwhile project but I have mixed feelings about the title 'What doesn't kill you', as I assume it's meant to suggest the following 'makes you stronger'. And the wording about ordinary people triumphing over extraordinary difficulty... I don't feel like I'm triumphing, and I...

I tnink there are some genuinely disordered breathing patterns, such as hyperventilation, shallow breathing, breathing mainly with the chest not the diaphragm. I don't know how difficult it is to change this and what is the most useful way of helping people to do so. I have found some breathing...

Some people with very severe ME/CFS cognitive problems report that, for example, when trying a particular treatment, or when they have a temporary remission, their full brain function returns intact. That is not the case in dementia, because parts of the brain are physically damaged. That...

When I read that I immediately wondered whether one of the pilots might be suffering Long Covid brain fog.

For anyone relatively new to the subject, it's worth reading this thorough article explaining why the CFQ is badly flawed: S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

I googled this and was offered useful advice on watering and fertilizing my dahlias. Seriously though, why do psychologists think they have anything useful to offer in treating physical pain.

Perhaps it's a different sort of intellectual impairment. For example, many members describe it taking over an hour to write a post of a couple of paragraphs. The post may be intellectually sound, but the effort required may be daunting, and only possible at all on good days. We also have a self...

A sure sign, if we needed one, that the paper is unscientific, prejudiced rubbish.

I find it hard to believe someone with ME/CFS on, say 1000 steps per day just around thier house, would not at least increase to about 4000 steps if they improve significantly and are able to go out more, even if they are doing more brain work. The problem might come with milder ME/CFS if the...

Thanks, that's interesting. I think if we need to monitor our hearts for heart related medical reasons it's best to use medical grade kit with a chest strap. For people like me who want to monitor in a fairly haphazard way to reinforce our symptom based decisions, a wrist worn monitor intended...

I think about once a week to ten days, but I keep the charger set up by my bed along with chargers for laptop and phone, so I tend to just plug them in when I think of it. The fitbit charges quickly, from half full to full in a hour or so if I remember to look.

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Looks like I missed the first page with details of how to apply: Link Opportunity status: Open Type: Programme Opening date: 9 July 2025 at 1:00 pm Closing date: 2 December 2025 at 1:00 pm Reference ID: 2025/354 Ready to apply? Apply for this funding opportunity through our online application...

Link Efficacy and Mechanism Evaluation Post-acute infection syndromes, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome Research specification We are keen to accelerate progress in the treatment and management of post-acute infection syndromes and associated...