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There are no words. At least none I can use on this forum without upsetting the mods.

I use sterimar congestion, which is very effective as a decongestant, but it does nothing for the persistently runny nose/chronic rhinitis and the saline and constant blowing tends to dry my nasal passages, so it's a balance, and a nuisance. Vaseline is supposed to help with that, smeared on the...

This sounds to me like something that social prescribers are supposed to be able to help with, to find local groups. This sounds like a perfectly reasonable request to me. Meet up website and app shows local social and hobby groups. I'm sorry to hear that you had such an awful experience :hug:

I want to know why they are going so hard down this path with this toolkit/questionnaire and getting involved in clinics and apps all with the same rehabilitation focus.

Exactly the problem. How many pwME know the history? How many think it sounds like a conspiracy theory? How many feel so alone with this nightmare of an illness that they are grateful for any support, and any warnings from folks like us can be easily dismissed as a fringe of angry patients...

I am hearing more and more about this and people struggling with it, and in pwLC, so there is definitely something worth investigating. Again.

What is with these names? I don't know if they are aiming for cutesy or some sort of weird code As a neurodivergent person :wtf: No. Stop.it.

It's amazing what they will do, and waste money on, to avoid funding biomedical research that might potentially lead to a treatment at some future point beyond the current parliament. Short-termism meets willful ignorance.

I filled in all of the questionnaires, but that was 4 years ago and it seems to have all gone quiet? If it provided a comprehensive overview of symptoms and symptom clusters it would have been a fantastic tool. Is Jamie still on here?

Have there been any recent updates on this project? Do we know what's happening with it?

I fail to understand the stupidity of this; The government are desperate to get people back into work. Something like 1.2 million people have Long Covid and ME/CFS. Successive governments won't fund research for treatments because they say they can't afford it But they will continue to waste...

I keep saying this, but I don't understand why we are reinventing the wheel and not using FUNCAP, but also wasn't Jamie Seltzer doing this with the Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease)? What happened with that project? Also, the clearly...

Call for people to participate in ME/CFS research: ME Association’s Clinical Assessment Toolkit (MEA-CAT) Project https://meassociation.org.uk/2026/04/call-for-people-to-participate-in-me-cfs-research-me-associations-clinical-assessment-toolkit-mea-cat-project/

Thanks for the explanation. My usually lovely GP recently said "would you like an art class?" Right after I had been complaining about not being able to get out of the house except for occasional appointments, which wiped me out. Apparently art therapy is the new answer to mental health issues...

Irony is dead, huh? MUS, PPS, rise of FND etc..

Really? I did not know this. But, now they have found it, it seems meditation,(and/or yoga and breathwork and always exercise) is the cure for everything? :unsure:

"Also, everyone thank NYT for another wave of POTS/MCAS/Dysautonomia/gastroparesis/ME/fibromyalgia appointments incoming." Because even though POTS is measurable, treatable and by all metrics an actual real condition, we are all influenced by tiktok, I guess and not seeing the results of a...

My bolding Can successfully kicked down then road then. Absolutely disgusted.

What the fresh hell is this nonsense..?!

Yes exactly. Plus neoliberalism suggests that we are all individualistic and entirely responsible for our own health and wellbeing, but there are a lot of things that are completely out of our power to control that people are being expected to "optimise" for and blamed if they don't. Yes, and...