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Had the GP out to him and he went through the motions of taking his temperature etc you could see that he was not going to be convinced that he could do something for my son. The marks he just shrugged at. He said about Psychological involvement and said this did not mean it was all in his...

I love this the #LOWBATTERYMAN off to find him on Twitter

I agree with you, she does undermines her piece and glad to hear that they are loosing people in their filed. However, we know they have not gone just moved to FND like SW? Do we know or can we find out if the PACE trial authors paid for the article? Should this be public knowledge if they did...

I sat dawn with my coffee and read your post Johnathan and like the caffeine, you are so needed. In a world gone mad I'm not sure if I could cope without you, Science for ME and all the community. I help support Fiightback and the situation is beyond words at the secret courts and the false...

No you are correct they will not be asking patients and furthermore and more of a worry the Drs will be given their understanding of severity and when reading the cited severity meaning not able to go to school for more than 1 day a week the mind boggles of what this will interpret anything the...

I read it as though there was an increased risk and they needed more info. They did include Coeliac in 2007 NICE guidelines. There is also good evidence that small fibre nephropathy is caused by Coeliac and this can be kicked off by gut infections. Would this then tie in with glial cells. This...

Would also like to point out that this is part of the British Paediatric Surveillance unit of the royal College of Paediatrics and Child Health. Who now offer Fabricating and Inducing Illness courses for £500.00. A 2 day course in court witness also at £500.00 Is this ethical? now need to go...

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