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A related story https://www.bbc.co.uk/news/articles/cewl59xyke9o Woman with paralysed stomach told she was anorexic

I don't like this use of 'feeling sick' in a questionnaire. Does it mean feeling ill or the specific symptom of being nauseous? I know there's the two countries divided by a language thing, but I think feeling sick is used to mean nauseous in the USA.

I do get "hard limits" when there is literally nothing. I'm on the floor and I can't move. Not only due to exertion - I can be in bed, unable to turn over. At the risk of overcomplicating, I think there are more variations. There's the Baseline Fatigue and Weakness, along with all the other...

Even referring to the patients as Mrs This and That seems old fashioned and inherently sexist. Makes me think of "women know your limits" from The Fast Show.

The SNP doesn't send anyone to the House of Lords as a matter of principle.

I'm so angry about journalists' failure to interrogate the Tory plan to take £12bn out of disability benefits to cut National Insurance payments. https://www.bbc.co.uk/news/articles/c8005jp0g71o All the debate is about whether it is feasible to raise that amount of money in this way, not the...

I was recently thinking about a cat I had who was diagnosed with cat leukemia and eventually had to be put down. I'm very bad at remembering timelines, so I don't know if I adopted him before or after my precipitating infection (I inherited him from a friend), but it was around the same time. I...

I think that, as you'd expect, there's a higher prevalence in health care and education. The (late) ME nurse Keith Anderson told me there was higher prevalence around estuaries, but I don't know what his source was. You are right @Hutan, we know so little about the patient population.

It looks like participants could receive a diagnosis through the study. Are there ethical considerations about that? I'd thought about taking part, because I can't be useful in other ways. So thanks all for unpicking this. It doesn't look like it'll provide any useful information and I...

I wonder if there's a creation of a spurious schism. Faction A - the current gaslighting model works fine, no need to reinvent the wheel Faction B - we need a novel gaslighting model (exactly the same as the current one), so we can have a shiny relaunch Faction C - time to stop gaslighting...

I haven't seen all the questions, but with so many you'd think they'd be able to have the granuality needed to capture pwME's lives, but it's all so broadbrush. How about - standing - how long before you struggle - less than 2 mins - 5-10 - over 15 mins? Part-time work - that could be 20 hours...

"Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities." This...

I don't think there's a case that the genes predisposing towards ME would have been likely to be mostly eradicated. Since the prime age for onset starts in the mid-twenties, in the past and in many societies today, the majority would have started a family before becoming ill.

"Avoiding adverse reactions". I think it's a big jump to say massage is safe for pwME. We know that in very severe ME any kind of touch can be excruciating. My own experience is, that in the early years of trying anything, I had massage and reflexology (feet). Both of these made me feel...

I'm probably wrong, I haven't looked at the documents. Too overwhelmed. The announcements seem to be about replacing the all the income from PIP with vouchers or/and very minor adaptations or aids.

The minister (I've never seen him before) not getting it on severity. Starts saying some people with ME struggle with activities others take for granted - and then it's going to work and taking their kids to football matches, not teeth brushing or writing a short email. Disappointing that the...

I'm just so confused now. There's been so many consultations. This seems more about the Severe Disability Group, not about the announcements/threats over the last few days. And why do we have to provide evidence when none of this is based on evidence. I used to work with government...

"However, this finding is believed to be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience." This commonly repeated assertion makes no sense. Patients only seem to be subjected to...

Please remove this if it breaches the rules on political content. I've just seen MPs, including the Chancellor, on TV talking about taking part in the London Marathon. They are all raising money for health/disability charities. To be honest it makes me feel sick, since many of them have...

@JemPD, I'm sorry, I haven't been online and only just saw your post. I don't want to leave you worrying. No, it's not about a starting a new claim (although that was my fear). The person on the phone said several times that they were sorry and that I'd done nothing wrong. Unfortunately, this...