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Wish I had something useful to suggest.... Do you think there is anything to be gained from seeing a respiratory specialist? Would your GP refer?

Hello @Mike Harley - great to see you here! In case I haven’t told you - I think what you have done and are doing for ME awareness is totally amazing. :trophy@:trophy@:trophy@

Edited to add - can you see the halo?

The article also says that taking biotin might affect your TSH test results - something to be aware of for those of us having regular blood tests for thyroid function....

I really hope that the study does uncover some clues, despite the negative overall finding. I was certainly pinning my hopes on rituximab so I’m really disappointed. Having said that, in NZ I am not sure if/when it might have been available even if the study had been positive. I’m positive for a...

@Barry - re the battery analogy - I said to my husband that my alternator is faulty! The battery won’t charge up and it won’t stay charged... it doesn’t matter how much I try to recharge, because the alternator is broken, the battery runs down really quickly! (Obviously he is a car nut!)

But there isn’t always an acute infection when an animal isn’t well.... for instance, I’ve just had a chicken with some problems. Birds typically don’t show evidence of illness/pain until it’s bad - I knew she wasn’t right instantly. No infection. No need for antibiotics. Chicken now ok and...

It’s very clear to me when one of my animals isn’t well - they go off their food, hunch up, look miserable and take themselves away from the others. So, if humans do much the same, I presume the mechanism is likely to be similar. I don’t think that higher cognitive functions need to come into...

She writes well, I think.... I like her tone.

It wouldn’t surprise me if there turn out to be both auto-immune and auto-inflammatory variants of ‘ME’...

@Trish I think I would try to open up conversation with the lead researcher.... if there is a way to make this a positive experience for you and for her, it perhaps has the best chance of effecting change for the better... good luck!

I answered 1. I think I’m fairly stable overall, but I have days/weeks where I feel worse. I had one period of significant improvement when I went overseas on holiday - I gradually improved over 6 weeks to the point where I could walk for 40 minutes and could feel well. Then this slipped away...

Positive results from the rituximab study and the cyclophosphamide study... Easier access to benefits for pwME Global acknowledgement of this as a physical disease And then I would like to win the lotto this Saturday!

Slightly off-topic, but if you will allow me.. My sister-in-law sent me an email a month ago saying she had just heard about the Lightning Process, and it sounded very exciting- and had I? I didn’t reply because I didn’t know how to without potentially causing upset... But I talked with her...

@Hutan - do you think your GP has any idea of how incredibly insensitive she has been? I can’t believe she would use those words... would a letter to her explaining how that made you feel have any impact? I recently wrote a thank you card to my GP and her colleague when I had a breast lump -...

I find the notion of ‘secondary benefit’ to be particularly unpleasant. It shows a remarkable lack of insight on the behalf of the researchers/doctors I think. I’d love these people to experience symptoms for a week or two and then argue their position again. Sure, there are probably a number...

Thanks @Andy :)

Is there any way to watch from outside the uk?

So is she presenting just to have her ego bolstered? In which case, she must be in trouble......

I think she’s delusional about how she comes across though. I mean - you don’t have to know anything about the history of ME to feel creeped out by what is written. It’s so insincere and holier-than thou...