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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...

Have people applied and been turned down?

Well that made me grumpy and I should not be surprised but I have to say I am. It would seem they have reinvented the wheel to be a square. I knew there were vessels but I thought or it made it sound as though they were a second level and although they knew from war trauma units it was best to...

Have we heard of anyone putting themselves forward and being rejected?

I also thought of what Ron Davies has found with the blood cells not being squidgy enough? It opens up a whole lot of questions. I have sent it to him so will wait and see what he says.

I think you will find this interesting https://www.sciencealert.com/hidden-network-of-secret-tunnels-found-in-bones-is-totally-crazy-scientists-say

I think there has been an upsurge in research and acceptance. I also come across this Jo with a few children not even being given tests for this in the first instance and this is causing a big issue for them in later life. I was aware there was an outbreak in the USA but NHS has issued warnings...

There is a new tool Kit for GP https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx I also find this interesting but haven't had time to digest it all yet https://medicalxpress.com/news/2019-05-mast-cells-crucial-osteoarthritis.html

There are a lot of concerns about this. Portraying it as a treatment before it has gone through a trial should have been picked up well before now; goodness knows I have tried. I wrote a blog here about the impact of such a trial...

Whoop whoop that is what we need. Now just have to sort out the courts, my letter is now on the way :thumbsup:.

Do you think they listened ??? I made that point and also advised that those that could not explain Me and PEM should be excluded including those who wrote the BACME severe booklet.

Do we know if anyone has put themselves forward and were rejected? I did write in with my concerns about this and am now writing to the Family Courts as this is where families end up in when accused. The problem with Family courts are that they are secret and no figures are held of those...

For me with the mum's I speak to and the children who are put through so much gaslighting, it is the recognition of PEM that we need to address. The silent slide from our reality to being told it is our children's behavior or our in-print of anxiety onto them. It is like slipping down the...

GOSH closed their CFS clinic who were trained by Porf Crawley. They moved with all the same Dr/consultants I believe to UCLH They seem to follow the BACME severe journal of 2018 that states even when a patient is severe they should be moved or have physio and at the moment children in a very...