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I know you were not defending the trial. My remarks were sort of dumbfounded disbelief and trying to understand how on earth this got past any sort of ethics. To say I am flabbergasted is an understatement. I should be used to this by now.

Celiac disease was reported by Simon Wessley as being more prevalent in those with ME/CFS in 2001 page 336 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1731400/pdf/v054p00335a.pdf and here http://www.ncf-net.org/forum/celiac.html Studies are now looking at Celiac nephropathy and this could...

But to anyone that would not make sense at all ever? How on earth do they expect to get correct figures and a follow up in what? If they are bedbound the GP or Paediatric would not see them. Then we have a problem with Drs not understanding the severity and then what if no one turns up in that...

I have read and reread this and still I think it is bonkers, I have added my questions in BOLD The literature that is available suggests that once children become housebound and stop going to school for more than 6 weeks, recovery and return to school is slow. Unpublished data (is that...

Just managed to edit the title so that date and EC appears. Amazing what you can do with more coffee and staring at a screen willing yourself to understand the obvious :rolleyes:

That made me giggle. Look who is funding it the MRC which will let them off the hook when they talk about funding and the minister can talk about figures and no one will talk about PEM or tube feeding and travelling to GP or hospital is too much. convenient all round. How do I add to the title...

I just came across this this morning and it fills me with what I can only describe as the collywobbles. Firstly how many children with severe ME will go to the GP or hospital? Almost never. What condition will the Dr/Paediatric know what to look out for? I now need a bucket of coffee and to...

The live link I was watching said that Clair was looking forward to working closely with patients. At which point I spat out my coffee and still have not recovered. Chris is part of the Kings Fund I think they said he was giving up his chair to be part of this :coffee::coffee::coffee::coffee:

You don't get to know much about their healthcare. I think; when I have time will have a look and see. Even if I can put some Drs to shame from some good practice would be a good thing to tweet.

Thank you that is always nice to hear. Mostly I speak up for all those mothers that can't and for my son who is my #MEhero

I wonder if there is a country that treat children or anyone with ME well?

I have been trying to flag this up for a year or more. In the debate on the 24th January the minister said it was the Royal Colleges of GP who are giving training and setting exams for ME patients. If this is correct and it would seem to me they are trying to standardise things, that the Royal...

He now has a facebook page and is promoting Kings College it's in his blog https://my-me.blog/ you can follow his journey. That will be fun

Your last comment always makes me think of the ugly sister trying to get her oversized foot in the glass slipper for the kingdom. Never going to work no matter how hard you try and make extending activity if you have PEM after reading a book, how do they think extending your walk distance is...

I just wanted to post this here as I think this will become important with the new guidelines. As the minister in the debate it is the Royal colleges that call the shots for education and I think they are paying for the guidelines to be updated. New guidelines for Medically Unexplained. What...

This is done more by the RCPCH and the police involvement and they only have to site possible emotional harm now as a reason. Withholding the chance of recovery is used as a possible emotional harm.

NICE have said that they do not give a criteria for diagnosis so how can she use it?

I went on the website and ran away lol at speed scared the heebie jeebies out of me Did contact this journalist though. His more my style https://www.eadt.co.uk/news/malcolm-is-a-little-unwell-documentary-stamaril-vaccine-1-5860556

He works with Crawley and he is a comedian that write for Private Eye... I have a lot to say about that but need more coffee before I start

Fiightback are there offering support and gaining momentum https://www.fiightback.co.uk/