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Here is another research paper just released and disappointingly was From Sarah Jannett Knights https://www.frontiersin.org/articles/10.3389/fped.2018.00302/full?fbclid=IwAR0RZLGw4fvVKJYklPjFj1B4KnK3K0j0KLbyRCZvav4w3gJ1QOAT6Q4n5UE What I find shocking is that there is no mention of PEM and...

I just replied to Jonathan with how it FII seems to be being rolled out We are seeing an increase in mothers being accused and questioned about how they see their child's illness with a view to the risk of emotional harm as the reason for taking the child away from the mother. So now we do...

They are now looking at EDS ME and CF or CFS as FII with one expert witness just using medical history regardless of diagnosis, if fatigue is on there it counts. The way FII is accused now is on the grounds of potential emotional harm. As there are not bio markers or proof that children are...

That got a giggle

They would not know it even if they fell into it? They will turn it their findings into what ever sticks so they can look better than they are

Just read the Daily Mail posted by Daisy May. It is very much like watching Alice in Wonderland teaparty while they use chocolate teapots and call it wine, has nothing to do with science more to do with they think we are fools

A little bit of that with a little bit of - we are really clever and we have found out that in other diseases it causes this sort of thing (they leave this vague so they have wriggle room) so now our friends can go to NICE and say we have found new evidence of this thing (no description given so...

I just found this study with MS and EBV in the brain which I thought was interesting. It deals with an accumulation of EBV in the brain. Now with ME we have PEM which enhances all the symptoms suggesting that what ever causes them is elevated? Could this more of the problem than reactivation...

I think we also have to think about them renaming it to Neurological Functional Disorder. They drew up guidelines earlier this year. They have changed the GP listing to neurological and they have Fabricating and Inducing Illness lined up there also.

Yep that is a good way to be with friends and family.

I totally get that it helps to feel like you have a purpose, still makes you a hero :-)

True and the fact they kept funds untouched or in some cases used for other research is enough to my egg boil.

Sorry that is confusing (I use that term for my son, it makes it easier on him emotionally) recovery back to base line. I need a better way of explaining.

They should also track the recovery. Not so much the time it takes but what happens to the body as it tries to even they systems out. By tracking this they will get an individual response. Track that with others and you will get the bigger picture? Problem funding?

There are enough Marathons being run to take a questionnaire to?

With regard to wired but tired, I think they should track this more closely and for longer. I think the PEM goes in a circle/cycle and can indicate when recovery is starting. So Baseline > activity > surge of lactic acid > wired tired > more symptoms > if you rest you then get less symptoms >...

Just wanted to say thank you for doing both of these tests, I think that is amazing. I also wanted to ask if the sleep problems were wired yet tired/exhausted/fatigued or were more of more sleep needed. I think the two differences are part of the problem as in two different parts. Second thing...

They did say at the meeting they would make an exception when he posed the question. However if someone wanted to appose him being on the guideline they could use the rules?

Yes. NHS call for the guidelines and they called for safeguarding to include FII also for the Functional Neurological disorder (FND). Put the two together and you have a perfect way of protecting CBT and GET on children at least. Moderator note: The detailed discussion in this post has been...

Yes. NHS call for the guidelines and they called for safeguarding to include FII also for the Functional Neurological disorder (FND). Put the two together and you have a perfect way of protecting CBT and GET on children at least. The role of Health and Social care Professor Viner research with...