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Off topic for this thread, I know, but this is yet another potential heparin responder.

But does it go without saying? Take the Visual Analog Scale (1-10). What does it mean that my pain is a 5? Does it really say how much pain impacting my ability to work, take care of kids, take care of myself? Or does it just reflect the tyranny of the mean? I know I usually that answer with a...

To be fair, I wish clincians would focus more on what I'm doing rather than how I feel. I don't care what number I feel like on a 1-10 scale or what bubble I fill in on whatever questionnaire du jour we're using. What I care about is can I take a bath on my own? Can I clean my own home? Can I...

Thanks. I was worried after I posted it that it might have come across as too much of a screed or that it might seem like I was having a go at individuals in the thread---which I was not. I suppose this was a rant that has been a quarter of a century in the making. It's been especially hard...

This is absolutely true. Which is why I agree with @Jonathan Edwards 110% upthread. A letter from the Grand Poo Bah of Medicine (if such a thing existed) is not going to get patients domiciliary care. It is not going to get them parenteral feeding. It is not going to get them home care service...

I start shuffling rather than walking. I use an old-fashioned tri-axis pedometer clipped to my underwear and as movement becomes more difficult, it measures fewer and fewer of the steps I'm taking. Usually the toilet is 14 steps away but some days it may only pick up 2-5 steps (or sometimes even...

I'll agree with Jo with my own experience with Ipswich Hospital but in the opposite direction. Twenty years ago (when my ME/CFS was moderate) I was visiting my partner, who was living in Ipswich at the time. A few days after arriving I started having pain in my calf --- especially concerning...

Forgive a Yank popping in to the discussion, but it does seem like this may be a key to the dilemma of services NOW for ME/CFS patients: collaborating with patients with other diseases/conditions that also require home care because most of those patients are probably falling through the cracks...

At the risk of derailing the thread (or making more work for the moderators in starting another thread--sorry!), I just wanted to add a big "me too!" to @Sean and @deleder2k . Pre-menopause, alcohol could be helpful (but I've never been a big drinker so my sample size in terms of type of alcohol...

I do wish we had better language to describe the sleep problems in ME/CFS. Ok, sure, sleep is unrefreshing; I feel ghastly for the first few hours after my second sleep. But it doesn't capture the way the biology of sleep in this condition is just not working properly. I get it all: sleep...

Surely we can train medics to simply acknowledge that pwME/CFS or Long Covid may need to lay down due to OI or wear sunglasses/eye masks/ear plugs due to problems with sensory stimuli when they show up in an ER/A&E with pulmonary embolism or some other life threatening condition? It is true...

OMG yes! This is exactly how I always describe it: gravity has become even more intense.

No worries. I'm often like that too. :hug:

Thank you. The point I made above exactly.

The question is not necessarily can you work but are there any actual jobs in the national economy that you can do that will produce enough money (i.e. surplus value) for capital to make it worthwhile hiring you? Tomlinson is using a lot of weaselly language (though whether deliberately or...

Excellent way of putting it. I, too, use "difficulty processing sensory stimuli" rather than "sensory hypersensitivity" for all the reasons previously stated. I also often point out that dodgy governments--particularly my own--use sensory overload/deprivation and orthostatic stressors in...

I can indeed confirm that we Yanks still tend to typically use a kettle on the stove (though I do use an electric kettle here in the bedroom--and @alktipping's comment explains why it takes about as long as the stove). I met my partner, who is in the UK, online and the first time he heard the...

::breathing a huge sigh of relief:: For years I've been thinking this forum would be a goldmine of knowledge for putting something together that is much better than anything out there on ME/CFS but I just couldn't quite get my thoughts together and it seemed like such a big ask in a group where...

Yeah it's been a real mixed bag for me. I started having missed/late periods in 2019 and by Christmas was actually able to enjoy myself at my sister's. But my periods returned with train table regularity in 2020 and by August was getting sicker. Then the worst crash I've ever had happened in...

I really think this study deserves an award of some sort. I don't think I've laughed as hard after reading an abstract as I have for this study. :laugh::rofl: