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I like your list, I think it would give an accurate insight into my level of functioning. :thumbup:

I asked Dr Bansal (when he was still at St Helier's) about MCAS and he said, 'we don't know if that actually exists'. Given my allergy-like symptoms, he told me that I have irritable mast cells. I think I said they're not just irritable, they're livid (I was having long periods when I couldn't...

I couldn't agree with this and with the general sentiment expressed on this thread more. I find it very worrying and I really hope that researchers do respond and make their positions clear. It's really difficult as a non scientist/medically trained sick person to wade through all the info...

I definitely feel it in my neck when I've overdone it. I don't think I'd describe it as pulsating but it feels inflammed and a very deep, strong ache (like a migraine in the neck and upper neck/lower head).

Thanks, I'll give this a read. I like the metaphor of the broken water wheel.

Signed. I couldn't get to the FT article, but read this one in the guardian: https://www.theguardian.com/business/2020/jul/27/rishi-sunak-online-sales-tax-protect-high-streets-coronavirus.

Thanks for reporting it, I will do the same. I'm unsure whether it will have any affect though. I think the main problems with this video are: 1) He doesn't introduce himself and make it clear that he is not a medical professional or scientist. 2) He doesn't explicitly state that his...

Thanks. Yes, I think it's interesting anecdotal evidence of how neurologists have viewed ME patients rather than being particularly damning of SW in this instance. Handy for him that it fits his narrative so nicely.

Wow, shocking. I have not heard this. Where did he say this? Is it on record anywhere?

I have used cromolyn sodium as an inhaler for ME/CFS symptoms. This was before I knew it was ME/CFS (I had gradual onset). The GP prescribed it for the tight chest and breathlessness I was experiencing. It made no difference. I take sodium chromoglycate tablets when I get a stomach flare up and...

oooo, fascinating.

Excellent article. Does anyone know 'long-covid' is affecting both genders at the same rates? From what I've seen (very little) it seems to be fairly equal. Yet ME seems to affect women at a higher rate. Also, I wonder if there is there a gender difference between people with post-viral...

I agree. I see positives but I also have concerns. Viruses can take time to get over. Post-viral fatigue is horrible but it often gets better gradually with time. I think you can now be diagnosed with CFS/ME after 4 months of post-viral fatigue? If it was up to me, I would call it post-viral...

I'm confused about the difference between the two. How do you distinguish between energy problems/fatigue? Surely what I call 'fatigue' might be what you call 'energy problems' and visa versa? Fatigue is a very broad term that's generally used to describe a whole host of different sensations...

Yes!! It has always seemed to me that they have based everything they've done on people with depression based fatigue rather than ME/CFS. What's astounding is that they have lacked the humility or curiosity to consider that this might be the case.

:party::party: Happy birthday! So much achieved in just one year. I'm always so impressed by your approach. Thanks for all you do!

Absolutely - I reserve judgement about the newspaper too. Curmudgeonly Bugger Therapy, very good :joy:! @Barry Sorry, I thought you meant you didn't agree - not that you literally couldn't see it!

Do you think? I'm just wondering, wouldn't that risk encouraging people without a diagnosis who may have chronic fatigue for other reasons to sign up? I might be wrong, just my initial response.

Yes, it is someone's concept of balance and rightly in my opinion. It's not like they asked some random alternative person for a quote - this is the Royal College of Paediatrics and Child Health. As an educated reader who knew nothing about the subject, you'd think it strange if medical side of...

I agree. I think the quote is clearly presented as a 'defence' and not the 'truth' - much more time is given to the stories of the patients. I think the journalist framed it well and I think it's really helpful coverage. I actually think it would be strange not to have a quote from the 'other...