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As a long term wheelchair user, I think there's a lot more acceptance and understanding. I wonder if part of it is driven by the number of elderly people who now have access to powered mobility scooters? Even 20 years ago there were far fewer of them, and the people who needed them were...

There are a couple of ways of posting links, Liz. One method is to copy the URL from the address bar and paste it straight into the comment box, like so: https://thesession.org/tunes/collections/5 ...which automatically creates a preview. The other method is to paste the address into the URL...

If they got someone genuinely interested and engaged, is there a chance s/he might see the shortcomings in the current system and try to argue for improvements? Especially over the lack of long term monitoring that's needed both to support patients and understand disease course, and the bizarre...

Companies that do have employees with significant access needs tend not to apply for it. It's entirely performative. It's like those trade associations—Accredited Garden Fencers, Drive Asphalters, or Pond Designers—which supposedly give consumers an assurance that they're dealing with reputable...

Often information doesn't make much difference, to be honest. The real problem is that it's hard for people to believe they can't help; that they can't do anything to change the outcome for someone. Nearly everyone who develops ME/CFS goes through a phase of believing there must be something...

Not to each other. But might there be something in going to doctors with symptoms instead of diagnoses? Allowing them to do their job and reach their own conclusions? Obviously it won't solve all the problems, and it'll do zilch to make dismissive doctors less dismissive. But it might help...

Thanks for posting, @Shadrach Loom, and great to see you!

Perhaps we should keep underlining that the debate is about how the symptoms are described, not the symptoms themselves. One of the reasons for debating it is clarity, without which we can't make scientific progress. Another is that the names of some syndromes function as code words that may...

Thanks for all your work on this and your explanations, @LizWorthey, and welcome! I don't know enough about genetics to contribute, really—except, I guess, to say that the Fukuda criteria ought to have been binned 25 years ago. The sooner researchers make a positive decision to stop using it...

Yes. And that's what I mean about harms having international reach.

Maybe something else we need to consider is that being given a set of initials like "MCAS" may confer membership of online groups. It's a tricky area because groups are so important to people with long term illnesses. They may be the only real source of support some of them have. But not using...

Yes, I agree there. Maybe people also need to be more accepting of the fact that if they go to a GP saying they get a lot of allergy-like reactions and that antihistamines help, the doctor may say they don't know why it's happening. Which is fine, because it's the truth. Doctors don't know why...

But the problem is that they're not accepted diagnoses, and using them in consultations may mean the patient is less likely to be believed. That's what I meant about people unwittingly harming themselves.

Communicating that they're being misled, I guess, not only to their own detriment but to the detriment of the whole community. Letting them know that if they push unfounded theories they are unwittingly harming other people, in ways that will be difficult to grasp unless they open their minds...

I've been trying to think of possible terms, but PSM (post-sleep malaise) is the best I've come up with!

Not the result of negative thoughts.

I suppose the counter argument is that, if a group really thinks they've got something but still need to pin it down, they might have to produce something shiny every now and again to get the support they need to keep chasing it. Which is kind of okay, as long as they're bright enough to know...

Google sayeth this:

They're experimenting on people, which is entirely unethical. They're asking sick people to pay to be experimented on by people who by definition can't know what they're doing, which is entirely unethical. They're denying people access to potentially useful therapies by not trialling them...

I tapered off a different drug by opening the capsules and taking out a very small amount of the powder before resealing and swallowing them. I used the pointed ends of interdental sticks to lift a teeny bit out, and they also served as a rough measure. I gradually increased the amount I took...