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A confession. Until I was diagnosed with ME, I didn't really believe it was a serious, debilitating and potentially life long condition. Most of what I knew about it was from what I read in the newspapers. Now I'm not saying I was judging other people, I never really gave it much thought...

Well done @jonathan_h. Honestly, sometimes silence is the best policy MEA. I appreciate mistakes can be made but it really isn't okay to respond to articles like this without thinking it through. You can always respond later if there's no one available to respond quickly. Someone might...

Signed. Up to 2,250 now.

The snag as I see it is this - there is no authority that can or is willing to step in and put an immediate stop to therapies that are dangerous. Especially puzzling for countries like the UK where there's a public health service. Less focus on job protection and careers at the expense of the...

Not criticising anything, I think it's a great piece. I agree. While hope is good, false hope is a negative, toxic thing. Sooner or later the person realises they've been lied to, however well intentioned the lie, that reduces their hope for a good outcome significantly plus leaves them...

Also, a thought on labels. We know there is a long list of chronic health conditions that take a long time and various tests, sometimes several repeats of the same tests, before diagnosis. We know that the longer diagnosis is delayed in some of these conditions the more harm is done and that...

Couldn't agree more. Still don't understand why they can't just call it the IDK (I don't know) instead of MUS (making up sh**). At least that way it would be reinforcing that this is yet to be understood and therefore an open mind might be required plus maybe some protection from snake oil...

Thank you. I'm not really up to coherent letters at the minute as I've got a complicated situation going on at home that involves a lot of toing and froing with emails. My head is wrecked. I'd be afraid they might want to enter into a dialogue & I can't guarantee I'd be able.for that. If...

That is sheer lunacy. Either they have the communication skills to do their job or they don't. While probably a fair percentage of what a GP sees might well be instantly recognisable & diagnosed on the spot, lots of chronic health problems that have biomarkers or recognized signs take a long...

Possibly. I don't know compared to other hoovers & just assumed they're all noisy. I stick my ear plugs in when the hoovering is being done too.

Whatever you do don't get a Dyson upright. They are very good hoovers but the suction is so powerful as an ME patient you haven't a hope of using them without triggering PEM. We one from the Animal range - it's a few years old now & I can't use it.

I occasionally get something similar but instead of noticing the tinnitus aspect I get a sudden slight colour shift that disappears. Mind you I have tinnitus all the time and it does change in pitch and intensity from time to time anyway so maybe I just wouldn't notice. I've often wondered of...

I would like to make a research proposal. Assuming they were able I'd like to go through the questionnaires with the young people as they answered them. Let them A) answer it as they would, then B) discuss what they think each question means and why they answered in the way the did and...

Yeah, each time you fill in one of those forms ESA or PIP it really rubs your nose in how little you can actually achieve. There is literally no thought given to the psychological impact of having to fill em in again and again. It really strikes me when people waffle on about the psychological...

My brother was prescribed them for pain for a while. I agree women are probably more likely to be prescribed them though. As they seem to be an option for pain relief then this could be as much discrimination against men as against women? It could also be that men are less likely to discuss...

I have family members who have all suffer from the same condition that can be excruciatingly painful. Paracetamol and NSAIDs can only do so much and even on a maximum dose prescribed for them it's not enough and they can be brutally hard on the stomach. Amitriptyline & other antidepressants...

Barbaric. I've had a couple of hysteroscopies and samples taken. Each done privately with a gynae who was really good. Each done as a day patient with a general anaesthetic. There was talk of possible needing to do another & he was considering doing the procedure as an outpatient. He looked...

Yes, that's right. Dumb it down even further so you can misinterpret the results of inappropriate questionnaires some more. Let's make it simpler & easier for the clinical team, probably by adding another layer of abstraction between what they're meant to be assessing and they're...

Yep, I started to get visual disturbance with out pain about 5+ years ago. My usual migraines became much worse and lasted longer around the same time. i was sent to a neurologist who was helpful about the migraines. According to him, even after the migraine has passed it is normal for the...

Yeah, I wouldn't recommend that! I had the usual ear piercing, in those days the jeweller did it for you. Naturally, as a teen, one in each ear simply wasn't enough for most and my friends and I gave each other an extra piercing in just one ear. Well, it was the eighties! I shudder to think...