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Yes, I think that's why Trish made the comment she did. As you say, against the idea of low oxygen levels being typical in ME/CFS blood, there is that issue of Systrom's findings of lower oxygen extraction, so higher oxygenation in venous blood, which seemed to better explain low energy...

Thanks Andy. Is there any convincing evidence that, on average, people with ME/CFS have more mood swings than is normal for people faced with an extremely debilitating, isolating, stigmatised, under-resourced and often very painful health condition? A brain bank project is a good idea, but it...

Inducing mutations in a class of viruses that attack humans sounds like a bad idea. Lots of articles around on this - here is one Guardian one Use of antiviral may be fuelling evolution of Covid, scientists say

He can't last forever. There is the younger presenter of the Health Report, Tegan Taylor. She seems to be a bit more switched on when it comes to this issue. Maybe she would be willing to allow people with other views to present them? Perhaps someone could point Norman Swan to our list of...

Wonderful news, our first Long Covid patient organisation has supported the open letter: Long Covid Support Aotearoa https://longcovidsupport.co.nz/ Big thanks to the group and to @SNT Gatchaman for facilitating things.

From the tweet above "Paul Garner: "Real illnesses that people can recover from". Top people in the field in chronic fatigue and post-covid conditions. Current dominant narrative of "incurable disease" itself harms people." So many issues in that. 1. Is Paul Garner himself actually recovered...

Note, despite this seeming to be a genetic problem, the symptoms started after an infection at age 15. The mother may also have the genetic variation but only had debilitating fatigue for a period of time.

The text (as opposed to the abstract) is more nuanced and accurate:

Here's the daily signature counts. There's been an increase in daily numbers just recently, I think that's the result of promotion of the petition by ME/CFS organisations. Please do encourage any ME/CFS or Long Covid association that you have links with to spread the word. We are really keen...

The project has ambitious aims: biomarkers of immune dysfunction and recommendations for primary care services, developed by listening to what people with Long covid say. But, it looks to have a good team. Here's a few notes on the researchers involved in this study, as I think it's useful for...

A number have been contacted but no replies yet. There are more we could contact if it looks productive. I expect you are right SS, that most LC organisations aren't yet aware of the influence of the BPS people and Cochrane on the recommended care. If anyone knows how to contact a Polish...

Sorry, it's Grenada West Indies in the petition signatures - I'll amend.

they lay the blame for any harms/non-recovery reported on the personality flaws of those who suffer them, rather than on the product We have a thread on the analogy Similarities between the tobacco industry and BPS/insurance interests and there's ME/CFS Skeptic's blog:ME/CFS SKeptic: A new...

Here's a review from the sales website: And a review on amazon: It's sounding like this is a major achievement that I had missed until now. @PhysiosforME have a great track record.

Thanks for posting all of this SNT. Do they give any further information about the results of the satisfaction survey? If only 49% of the participants bothered to participate in the followup, I think it's safe to assume that most of the 'non-respondents' were not that grateful for the service...

So nice to see the 7000 signature mark pass. Just because I have some time to fill, (and maybe because my country is currently out front, ahead of Norway by a nose) here's the roll of honour of signatures per capita: Figures are signatures per 1 million people; showing the countries with more...

There are quite a lot of signatories from the Scandinavian countries and the Netherlands too, particularly given their relatively low populations. But, yes. I think it's a bit of a number of things. One is that there may not be as many ME/CFS (and Long Covid and QFFS and post-ebola syndrome...

And so it goes on. Followup was at 3 months. Do they say how many of the 286 patients participated in the follow-up? As far as I can see, from the figures in the table posted above (numbers and percentages of the total - sample sizes are not directly reported ), the followup participation...

It would be nice to think that the very small number of signatures from Africa, Asia and Central and South America indicates BPS ideas on ME/CFS are less of an issue in those regions, but I doubt that is true. Looking at the literature in China in English, there is some uncritical acceptance of...

Thought some of you might be interested in the share of signatures by country/region. This is as of now-ish, a total of 6950. The segments follow the legend like a clock, with the UK from 12 o'clock to 4 o'clock. 64 countries represented now. Every country with over 100 signatures got its own...