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They have now opened up the Oxford Brooks study with regards to children https://www.actionforme.org.uk/children-and-young-people/nice-guideline-focus-group/

My son suffers a lot with this just as he goes in PEM state. I have been looking into Mast Cell as this is one of the symptoms. As he also has a rash at the tip of his arms when he takes antihistamine this disappears and since on this his that inability to open his lungs enough to get the air in...

This is a bit of a worry and part of it all https://onlinelibrary.wiley.com/doi/10.1002/msc.1421?fbclid=IwAR3zYyjNT5WtqxU0xP2i7rLknzHV7d3L8PpLDbw2tKFdW24F-mGRX8dSfnE

This is what the Governments strives for so they are not left with the funding or the responsibility and it will all end in calamity. They had a problem with Bounty packages given to new mothers and the research into baby formula milk they promote. How do we work our way out of this as no one...

So how do we pull it back? How can we show good science when most of it seems far from it?

Moved from a thread on another topic in the members only area. With the issue of EDS ME and Mast Cell the NIH released a video about this and wondered if this would make a difference in the UK about it all

Thank you so much for sharing this. I was wondering if any of the information can be used? In the UK there has been a young lady called Gigi who has been battling to stay out of secure Mental unit or out of a hospital that agrees with keeping severe ME patients active beyond their ability to...

I would say all respect and trust from parents but mostly mothers (as they are the ones who have to witness the carnage that unfolds in these trials and get blamed for that carnage) in the system has now evaporated.

Thank you @Andy an important piece of work - thank you. Felt slightly sick when I read what MRC was funding and feel that all our children are going to be re-diagnosed with FND. Has anyone looked closely at how they can determine Functional? Now going to sit in a corner and drink a bucket of...

Words just simply fail. I wonder if this sort of approach to data has been applied in other diseases? If this is done as a matter of course such as Diabetes, Cancer, Ms or Asthma then this would, starkly show how inadequate patient safety is taken. How can anyone give informed consent on this...

That was my point when in a PEM state it takes very little to push further into it. A cumulative effect.

The problem is most if not all Dr cannot tell the difference and this group are now taking ME/CFS off children who have been diagnosed by the best in the field and re diagnosing FND with Chronic Fatigue and therefor pushing children with ME into CBT and GET and mothers of Fabricating or Inducing...

They do mean among other things sensory but this would change with the PEM state and they cycle that goes with it. When you are stable the sensory is not too bad but push a person in a PEM state and soon the senses are involved. Sorry you have to come down to my level (which I have to say you...

No they are working their way back and I was upset to see ME Association give them a hand this young girl also has CFS

I get your point and would agree, however when funding is not easy to come by and you are fighting CBT and GET I may just forgive them... a little. So what would be your next step? I don't see they would get funding for a bigger group without trying a drug? Trying a drug and seeing the result...

Nothing wrong with small sample size and work out what is what. Big sample size would throw in too many differences; where as this gives a good base to then test against. More focus and I would like to see how this all changes with PEM, lactic acid and the metabolic trap. Everyone focuses on the...

Now there is a thought to give you the collywobbles. I dare not look, is anyone brave enough?

:banghead: So let me get my head around that misquote of astronauts - holding hands or not (wonder if that is what it takes to make them better). They are active in their spaceship with no gravity and their autonomic system is out of kilter when they get back. It takes a year to get find their...

For all those that ask about anti gravity exercising means these are the swings that you exercise on I am not going to say another word and this is an anti-gravity treadmill

I think they have to explain how that is achieved the journey from bed to a journey to where the classes are held. What they mean by bedbound and why they were bedbound. This does explain PEM and that is a big mistake (as always), why and how PEM exists before they try and treat someone with...