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I have to say that is a pretty feeble reply from BACME. There is nothing in our letter, accompanying document or petition that they have said they disagree with. I'd like to know where they are getting their information about a pause and restart. Why are they being told things that have not been...

Thanks, Brian, that's an excellent article. Do you know whether more research on this in more people with ME/CFS is planned?

As a non subscriber, I can't read your article, @B_V. Is there any way we can access it?

I wonder why they say the finding was unexpected.

You are doing an amazing job of awareness raising and fundraising, Mike. Thank you.

Given that the MEA does not provide medical care for individuals, and their materials about Long Covid make it clear that LC covers a range of symptoms that are not the same as ME, such as lung damage, I can't see that there's a problem with adding LC to their list of conditions the MEA provides...

I think the addition of Long Covid is a recognition of reality. First because the MEA, especially through documents written by Charles Shepherd, has been very supportive of people with Long Covid from early on, which many have found helpful and which I applaud. And second because many people...

From an email newsletter: A very successful Count ME In Campaign THANK YOU for supporting the ME Association’s recent Count ME In campaign. Your participation helped to make it the biggest and most successful national campaign that we have ever done. It was an ambitious project – we have...

That's a fantastic article, thank you so much @dave30th, @Brian Hughes and Steven Lubet. I learned a new word too: revanchism, which according to Google means a policy of seeking to retaliate, especially to recover lost territory.

Many thanks to the 12ME group in Belgium for signing the open letter and for sharing the petition with their Facebook group.

The only effective treatment option I'm aware of is hormonal, ie the contraceptive pill.

Wow. That's pretty much an admission that the 'treatment' is at best placebo, and at worst brainwashing, not health care. If it only works if you believe it works, it's not a real treatment. And it carries the danger that side effects and deterioration will be ignored and not reported, so is...

I note that the authors are all employed by the psychosomatic medicine unit of a neurology department. So no surprise then that they come up with such crappy 'research' with hypotheses about personality traits.

The protocol looks like they're making a good attempt to be thorough, with 4 groups using real and sham brain stimulation and real and sham aerobic exercise. They are also measuring objective pain and other features during and after the treatment. My main concern is whether any effect they...

Sadly it costs more to grow veg organically than not.

yes, I think so too.

Thank you Michelle. I think a letter from Physios for ME in support would be good. I wouldn't want hundreds of people bombarding them with individual letters, hence the petition, but I think a letter from a specialist professional organisation like Physios for ME, especially now with your...

Thank you Ash for putting that different perspective.

Thank you for your work on this. I'm pleased to hear some of the young people who have been through the FII situation are feeling able to provide information that can be used in research. It's such a horrifying situation, my heart goes out to all the families involved.

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