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Merged thread Daily Mail article My son went from being your usual 'party-loving' university student to needing 24/7 care in a matter of weeks after getting a mystery disease... we still don't have answers...

She is tweeting again

i had a friend (U.K.) with severe ME who was peg fed, then TPN and I am also pretty sure she had to be lying flat. So it feels like it can happen in the NHS but it’s not consistent. A big barrier seems to be the insistence tube feeding has to happen with the patient not supine which many people...

@ukxmrv, may I ask when you wrote above ‘Buying onto their belief it is a medical’, is ‘their’ referring to Maeve and is the dietitian claiming Maeve wanted her to acknowledge her ME was a medical illness? Many thanks.

Good points @SNT Gatchaman, thanks for your thoughts.

Great piece, makes a change! Thank you to Merryn’s mum and Maeve’s father for sharing their stories and to channel 4. One thing I think the report said a million of people with long covid have the form that is similar to ME. Is 1 million correct? I thought for those with LC with similarities to...

Agree latest BBC article is poor. Description of ME pathetic. NHS website on ME still bad. “ME is a long-term condition with a wide range of symptoms including extreme tiredness, sleep issues and concentration problems, according to the NHS website.”...

Were Fauci’s comments in an article I read in December some kind of admission: “Fauci said, however, that he and other infectious disease physician-scientists were soon swooped up into the still-ongoing global emergency of HIV/ AIDS, leaving relatively less time and resources to devote to...

Is anyone concerned that Fauci says in laying out a road map for how to approach ME/CFS, ‘first, stick with only post-COVID patients; do not dilute your sample with other post-viral conditions’? This researcher who seems to work with Professor Akiko Iwasaki at Yale on Twitter says: “Dr. Fauci...

In Hilary’s Johnson’s tweets of Nath’s presentation she says ‘“Kaplan thanks him for "long overdue" work. Kaplan: only 40 % noted worsening of energy after cardiovascular exercise, 20% reported mental fatigue, etc. Talk more about PEM." Anyone find it strange that he said only 40 % noted...

Thank you. What threw me were the words ‘not ready’ as I felt it could imply it would be eventually.

In the article, Shure writes - “Jennifer Brea insists that FND is “not a diagnosis that is ready for prime time.” What does this even mean?

It’s so depressing seeing the same old nonsense but damaging arguments being used in articles about LC - and in this article ME too - that people with ME have been subjected to for decades.

Awful article in the New Republic claiming there is a debate to be had whether ME and now Long covid should be treated using a psycho social approach. Claims there is no evidence exercise harms people with ME and scoffs that ‘would make the condition suspiciously unique in the annals of medical...

@rvallee, so true. All v 1984. @bobbler, I agree with all the points you made in your comment. Anti lockdown at any stage, anti masks and general anti zero protections groups are using this study to support their stance (a stance I don’t share) not only in the U.K. but other countries. This...

The lead author of this study is saying in articles about this study that as the study shows that people are ill after a virus or other infections without a positive covid test it suggests ‘the experience of the pandemic itself, and related stress, may be playing a role in slowing peoples'...

Apparently Cheney changed his thinking on oxygen treatment for ME. https://nopostergirl.com/2022/04/14/dr-cheneys-change-of-heart-low-dose-nocturnal-oxygen-in-myalgic-encephalomyelitis/

All good points but I did feel Systrom saying at the end there are medications available which then allows the person to exercise as, as Jonathan says, muddying the waters, as there are no accepted medications available. However, I take on board I will do a close reading when those not with our...

Thanks Ravn. I agree with your points.

Thank you. So do you think Systrom possibly over estimates the helpfulness of the medication he refers to in the NYT article? If I read that article without experiencing ME or long covid I would read it there are effective medications available which is not the case sadly.