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I feel for you, @Snow Leopard – it can be enormously frustrating, if not downright depressing if you think too much about it. I guess I'm lucky in having very little concentration to start with, so doing something requiring a lot of it is out of the question! It does solve a lot of problems. I...

I didn't mean that the symptoms are the same, just that the usage is. You do too much, and there are consequences – whether those involve PEM, pain from over-used muscles, or headache and nausea from drinking alcohol.

I didn't receive anything (I have been checking the spam folder), so just subscribed again. Two identical emails welcoming me, but nothing yet about the survey.

Before I learned the term PEM, I just used to talk about having 'hangovers'. Although it's vague and inaccurate, I think many people would grasp the underlying meaning – you overdo things, then suffer afterwards. I worked with a few people who were keen on sport and fitness, and they sometimes...

I find this worrying, though: "When I'm good I can do anything I want," he said. "I can walk for miles across the Dales no problem. But within days I can completely collapse. It took me nearly all of September to get back to where I am now." Many years ago, long before my diagnosis, I was...

I'm sure I've seen tweets from folk like Paul Garner that have mentioned PEM. Because of this, I'm a bit hesitant about coining a new term for it at the moment, as it could potentially sow confusion for very unwell people who're already on a steep learning curve. I wonder if just continuing to...

Yes, I think that is what's perceived, but I argue that this separation between the chronically ill and 'stable & predictable' groups is to some extent a false dichotomy. The resistance of the latter to the medicalisation of their impairments was born out of decades of exclusion, denial, and...

Absolutely – one of the biggest social barriers for some chronically ill people is work. I wonder what percentage of people with energy impairments could do some work, if it were made accessible enough and the benefits system didn't punish them for trying? And how that would impact their self...

I was exposed to EBV via my boyfriend some months before my ME began, but although I developed a couple of swollen glands a few weeks after he first showed symptoms, I wasn't ill. (He was really unwell, and needed a couple of months off work.) My worst ME symptoms in the first two years were...

I found the same, although I probably order a smaller range of foods than you (can't eat potatoes or pasta, for instance). I had to visit the store from which my deliveries come yesterday, to pick up my prescription meds. The stock levels of all the things that were unavailable to order online...

@Snow Leopard, if at any point you felt like blogging something like this as a sort of 'friendly challenge' to the research community – which could be shared more easily than posts on S4ME – I'm sure it would be welcomed by a lot of patients who lack the understanding of biochemistry/physiology...

This is the core of what the report discusses. I have split the first paragraph into three, in the hope of making it easier to read, and explained a couple of sets of initials – I hope that's helpful. "Chronic illness and the DPM [Disabled People's Movement] Investigating a social model of...

I haven't had any debates about it for a looong time, in truth. I became too unwell to carry on working in the disability arts sector in 2013, and since then all my conversations have been with people inside the chronic illness community. I can't even read books now, so I don't know what's...

In the first part of the tweet, she means that people – including, I imagine, far too many doctors and journalists – are lazily describing Long Covid simply in terms of fatigue. I'm not surprised sufferers get frustrated about that. I don't have too much of a problem with what I think she's...

I have a lot of time for his work; others contest it, some strongly. But in my experience, it's open debate rather than personal attacks, which is absolutely the way it should be approached!

I took it to mean that, whilst Covid-19 is often described as a respiratory infection, this may not be accurate; some doctors have, for instance, described it as a disease of the endothelial system. Not everyone agrees on how to classify it, meaning that the description isn't yet settled. I may...

I've just remembered that there's a good report on the Centre for Welfare Reform website, which specifically examines energy impairment in relation to the Social Model. It's quite long, but there is an executive summary too. If anyone is interested, it's here...

But you still can't log a negative result, meaning you're nagged by a self-isolation countdown for days afterwards.

I don't recall reading this before in one of these articles: "People who are asymptomatic or have a mild case of COVID-19 can also face prolonged illness. Sometimes, these symptoms take weeks or months to appear." Perhaps it refers to organ damage rather than symptoms falling into the ME-like...

It's absolutely your choice; 'disabled' is, and has to be, a self-definition. When I was first diagnosed, 21 years after becoming ill, I found it enormously enabling in strategies such as not making unfeasible demands on myself, asking for reasonable adjustments, understanding that a powerchair...