Search results

It's a good name but it does have the possibility of misinterpretation. I like it but trying to get the right interpretation of skeptic in a pithy title isn't easy! A few thoughts ME/CFS Analytical ME/CFS Analytica ME/CFS Detective Uncover ME/CFS ME/CFS Deep dive ME/CFS Unveiled

Had a glance at this and SOS are certainly playing on the edge by collaborating with the RCGPs and the Post Covid Society. Makes me wonder how much they actually know about the reputation and previous agendas of these groups? There is some good points in here but agree with Yann's critique. Why...

A hepa might be worth a go, especially as it can help multiple issues such as air and indoor air pollution and keep the risk of airborne illness lower. Hasn't helped my rhinitis only a steroid spray helps keep it under control

It does look like both. She is being used but she's also only interested in talking about this all in the media to sell her book. If she hasnt worked for a decade then maybe the bank balance is low and this seemed like a way to launch her comeback. I don't really trust any celeb who is...

Goodness, what a mess. Seriously amazing she said all that out loud and on social media. She sounds confused and let down whilst trying to not be. Alex Howard has done a real number on her. She still thinks she's post illness but still obviously struggling and symptomatic. They've put in a get...

Thank you @Jonathan Edwards & Sonya! That all sounds hopeful and positive especially that you both think that things "look as if they might change"

He went into private practice as he couldn't cope with the pace of a NHS general practice. Nothing wrong with that. But compared to other private LC specialists he's seriously overpriced. Not sure this is the best way to help LC patients?! The curing bit is likely headline writers.

I think it would of been easier if the pot plant woman had the article written by a journalist. But it was all her words. There was no excuse of poor journalism. It could have been easily tweaked to not be quite so insulting. She's a writer so she should be able to do this. The plant is a very...

On their being a more formal relationship between S4ME and AFME it might be worth asking if a PPI relationship could be established? It is normal for this to happen with research, but if a charity is producing literature/resources for the public some sort of PPI should ideally happen. (AFME...

Lyme is no joke and it's awful to see that she has been through the levels of denial and dismissal. On one hand she is publicly stating she had ME from Lyme: My only urghhh is she waited until she had a book to sell to actually say it outloud. This post though just looks like she mining sales...

The only good thing about this is that the only airplay he could get was a comment. If he's a Telegraph subsciber - that says alot!! There was a time he was doing hundreds of media articles either quoted or as an expert. At least in this media round there's been no 'othersiding' or BPS crowd...

A few possibilities: With the change of government it might be worth asking her if she/Action for ME have initiated or had any contact with the new health team - Streeting and Gwynne? Not sure if this is possible as the charities aren't hugely staffed or funded and personal advocacy they do is...

That's a really good point about CBT and how it just trains people to ignore symptoms and ask for help. It very much like how many people are essentially trained to ignore pain as it's not really there or even if it is it's not acute medicine so it doesn't take priority. Yes, they do jettison...

It looks like a plea to basically keep their jobs. Most of them are key figures in running the Long Covid network. They love the biopsychosocial model, and even try to refer to it in the most ridiculous 'poignant' way. It just gives me the creeps. They even have the nerve to say without them...

SW has a habit of calling Long Covid Post COVID Syndrome. Maybe for several reasons, he can't bring himself to call it the patient given term and it also is closer to CFS - as well as the insinuation that it's a post issue ie the virus isn't there and other 'things' are causing the sustaining of...

Can't say I'm mega keen on this diagram. Pain sensitisation seems to be a dubious theory to deny a mechanical or molecular process that creates pain. The issue is in most pain clinics or secondary care there's an immediate leap to pain sensitisation and behavioural techniques, with little...

SW skulking around Long Covid research with this new paper in the OEM (Occupational and Environmental Health Medicine) in the BMJ. https://oem.bmj.com/content/early/2024/10/01/oemed-2024-109621

I think that's a very good idea. It stops the watering down process of the multidisciplinary approach of those who can leave the house. It might, might escape BACME as this isn't in there provision or expertise. It's clear there is no community care at home or protocol for nutritional or...

Not warning about exercise is beyond daft. The system seems to be stuck in its own loop again and again. But people are asking a flawed system to right itself and it's beyond it's capability. We've seen the damage multi-disciplinary teams do in 'fatigue' long covid and chronic pain clinics...

Eek curse of the acronyms! Apologies it's EDM Early Day Motion. The link is here https://edm.parliament.uk/early-day-motion/61510/myalgic-encephalomyelitis-research-and-treatment They are usually done to see what support a project/bill has. Quadram is interesting, the driving force is Prof...