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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...

I'm with you on that one. Jo will know a lot more than most of us. Anyhow I think it is too late. I do think we need to know how these CFS dominated places work from those who are the most vulnerable. Forewarned is forearmed? I did a lot of work on the scoping meeting and went to the first...

I'm with you on that one. Jo will know a lot more than most of us. Anyhow I think it is too late. I do think we need to know how these CFS dominated places work from those who are the most vulnerable. Forewarned is forearmed? I did a lot of work on the scoping meeting and went to the first...

Like you say they are bound by lots of catch 22 mostly who is putting the money in. I don't blame them, I blame the system of not reporting harms, Doctors (not all) allowed to gaslight those who stand up to be counted but most of all not listening to the patient. They are not passive...

Like you say they are bound by lots of catch 22 mostly who is putting the money in. I don't blame them, I blame the system of not reporting harms, Doctors (not all) allowed to gaslight those who stand up to be counted but most of all not listening to the patient. They are not passive...

What happens with the children is that the treatment does not work they dismiss you or make your child attend inpatient stay. What ever the condition when you leave their care your child is counted as cured. Figures are not going to represent what actually happens if they are not truthful with...

What happens with the children is that the treatment does not work they dismiss you or make your child attend inpatient stay. What ever the condition when you leave their care your child is counted as cured. Figures are not going to represent what actually happens if they are not truthful with...

I think they are playing on the fact we will wait and see. Once the process has begun we will have no say and even if the laypeople object they will overrule as they did before. Not that we can do anything now anyhow, that time has past I feel. Luis Nacul will be used as the balance and I would...