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Its combining three different interventions, acupuncture, "chinese phamacological therapy" and dietary counselling. While the first might be a well defined intervention the other two are vast areas involving many different drugs and techniques. We have no idea what these people did to the...

Another thread on the Medicine sub about fad diseases with Long Covid and Chronic Lyme included. Not any about ME/CFS this time but related presentations like POTS.

I haven't. My GP office is as dismissive as ever, spoke to them a couple of weeks ago and its still the same old psychobabble nonsense out of them. Not NICE compliant, doesn't care and will never read the guidance. All my complaints dismissed, all my escalations of those complaints to the ICB...

The healthcare model, charge for the beating of patients then charge for the therapy so they can cope with the beatings until they inevitably kills them. This idea was meant to be you don't just pull people out of the river you go upstream and work out why they are falling in to begin with. The...

We know from the USA example with the moonshot 1 billion funding for Long Covid once a number has been suggested that is what is going to happen. Many people had criticisms of that number given the lack of social support and many Long Covid sufferers in the US becoming homeless but the setting...

I have been using FFP3 masks since March 2020, I had a packet from before the pandemic for working with MDF, they were at the time about £1.50 for 3! I wont be using anything less. Its pretty clear they work well, I have fit tested the ones I use now so I know they work as specified. This...

Fundamentally E readers feel a lot more like just reading paper. There is no screen glow the light they have is what is available in the ambient room. Kindle's have changed that a bit as they now also have optional backlights for use in dark rooms that are small amounts of additional light but...

There clearly is and they meet many or all of the ME/CFS definitions and have many of the optionals as well but in a slightly different ratio when you sample on symptoms. However there have been a number of papers, the first big 50% is ME/CFS is a classic, where they have shortcut the...

One of the important points that Chris Pointings "404k estimated ME/CFS patients" points out is that only about 100k patients have a diagnosis. 75% of all the expected patients don't have a diagnosis yet and that is a huge deal for research, does excluding 3/4s of patients make sense? More to...

I am all for this, I like a lot of the aggressive language being used as well to not mix words on how poor the UK state has been on ME/CFS and numbers impacted. Researchers are behind it, three major charities are behind it and I think 5 researcher centre and a controlling hub with patient...

Some of the ME Research UK quotes are damning https://www.meresearch.org.uk/academics-researchers-and-me-charities-unite-behind-post-infectious-disease-platform-call/ For once I feel like they aren't really pulling their punches, they are pointing at the systemic failures, the history of...

What is happening in Karen's case is hard to explain with normal NHS available procedures, capabilities within a hospital and home care. The reasoning for what is happening seems very opaque to the Gorden's and doesn't seem to meet what we would consider care that is normally available from the...

I have only been checking this since Covid rampaged through my body and made me worse but measurements of liver function vary quite a bit. Sometimes everything is normal and at other times the standard urine tests shows problems. Its intermittent which would explain why its only seen in some...

This sort of thing always concerns me a little bit, its denying a reality of the disease and none of the widespread criteria says it must be an infection onset, nor should it as it would exclude a decent minority of patients who can't point to that. Something about this makes me feel like they...

I can't help but think the healthcare systems across the entire west (the world?) have been so broken by "its just a cold *cough* Covid *cough*" and the lack of public health around all respiratory diseases that if you do turn up with TB they will simply send you home with a "mystery" virus...

Its negative against the lightning process but its more "this doesn't make sense based on what we know about Long Covid" and not "this is outright quackery and exploitation". Where I am meh is the idea that a third recover and the other 2/3s should be "supported patients in their recovery". I...

Its important also to consider the patients who won't have been doing rehab. All the PEM sufferers and those far too ill be attending rehab sessions. None of those were improved and couldn't do this rehab at all but those rejects aren't ever accounted for.

Selecting for mild patients seems to be the usual study bias, that and selecting patients that a doctor thinks has ME/CFS which selects based on who their GP and local clinic is rather than actual disease presentation. So many papers require patients to come into a lab or hospital at the...

I am surprised people averaged increasing their activity. If I did this I would instantly drop to almost no activity due to PEM where I defended my health over achieving what the nice person in a white coat wanted due to the crippling pain. I would enter the dark place too for many days to weeks...

I was really searching for the right words. Its Orwellian using recovery to mean it will go away in the future for something that will actually be chronic. Its also insidious in how it corrupts the use of language and frames the discussion and the patients perspective of what they are dealing...