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So an extraordinary definition of treatment completion - simply having a behind in a seat for two sessions. Not that the patient found it helpful or discovered something life altering about themselves. Just that they sat there for 2 sessions. Still, applying their own definition of treatment...

Is psychology the only field where failure is rewarded with additional funds so you can fail all over again? And again. Ad nauseum.

One of the issues that some in the UK have to bear in mind is that if they are claiming ESA and post frequently on social media under their own name then that could be used against them by the Benefits Agency when they are reassessed. This has a negative impact on awareness and fund raising.

This is true. Maybe if diagnosed today I would do it differently. However, with time and as I have become more ill, I have lost contact with many of the people I knew and rarely meet new people. Although I have some contact with some family members, they haven't been around enough to see just...

I think if I had a different label, such as MS, then there is no doubt that i wouldn't have had quite such a high level of discrimination. Having said that, I have met people with MS, diagnosed a decade or so before me who were treated as badly as I ever was, possibly worse. Some of the...

Ditto. My employer and some colleagues, despite always being able to call on me in an emergency and despite my appraisals always commenting on my work ethic etc suddenly started treating me as though I was workshy. Family members and friends who were always used to being able to rely on me...

I should imagine it's very common. When it's happened to me, it's usually the other person who has brought it up or started asking questions. I certainly haven't gone looking for an argument about it or been making an issue of it.

I have a feeling that Miranda Hart mentioned them in one of her blogs as a charity she supported.

Oh my word! Lucozade! I remember that. D'you remember when it came with that weird coloured plastic wrapping on the bottle? I loathed the stuff. I struggled to eat when I was very unwell as a child & my mother would make me drink this. Yuck!

Regarding S4ME and membership of tge Forward ME group. One can collaborate and work toward the same aims without being a member of a group. Sometimes being "inside the tent" obliges you to follow etiquette that can be restrictive and hinder your goals. Splitting away or leaving a group can...

Another reason why taking a headache pill is a poor example occurred to me. Unless you're suffering from something fairly serious it is simply not permissible to be ill, take time out and allow nature to take it's course. It is no longer the done thing to take a couple of days or a week off if...

Sorry, I don't know if you're in the UK or elsewhere. I know very little about feeding tubes and the like but wonder of the 25% Group (for severe ME) might be able to help. https://25megroup.org Also, can anyone remember which hospital Jessica Bearman was in - was it the Burrswood? If so I...

I see another one.... Pain relief of choice aside, we all know that the headache is going to go away eventually. We take pain relief to make it go away quicker. So the question is not whether the medication made the pain go away, it is whether is reduced pain to a more tolerable level more...

I agree with what you say @Esther12. I don't see a problem with highlighting that testing & treatments that may be available to some long covid patients (most certainly not all) has been denied ME patients for years. This isn't the fault of the newly ill though. We can lay the fault firmly at...

Hypoalgesia, hyperalgesia - how d'you objectively measure that then? How can you tell what's the right amount of pain? When healthy and getting fit or if I'd been on a long project or on holiday that interfered with my usual exercise I would expect some pain as I got back into it. However...

I reacted to a couple of pressure points only despite the rheumatologist's best efforts. He kept pressing, obviously putting effort in and asking me did it not hurt. Nope, I could feel pressure but not pain on the majority of the pressure points. Yet pain is a big factor for me.

Well, sometimes I like to imagine I've won the lottery or, better yet, recovered from ME. I still don't know exactly what that would be feel like and how I would react beyond being pleased. Why not go the whole hog and dispense with the participants and allow the researcher to simply use their...

It just occurred - this burning calves and ankles business. Yes, I'd forgotten, that irritated the heck out of me earlier this year. Then it went away. I have a feeling this happens when either my OI type issues play up especially in warm weather or I need to up my dose of levothyroxine. My...

This depends on the individual. In the UK at least. They are certainly cautious about oestrogen especially in women particularly at risk of certain side effects. Progesterone only won't cut it for some ladies. Here's a useful website for the curious - https://www.menopausematters.co.uk

I meant if the paper was published but one of the reviewers thought it shouldn't be. If the paper itself isn't published then I'm not sure there would be much point & it would be even more unfair to the author I think.