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We are at the stage of chickens running all over the place but no one is looking for the eggs. You cannot say the eggs are not there because we have the chickens to prove it. Find the eggs and collect them is the first thing we should do? Stop throwing the eggs out and start collecting them in...

We were talking about ME? Then we are talking about gut skin vit b and D mast cell autoimmune and POTS and how PEM provokes. The fact we have little to no research does not mean we should dismiss that lived experence and what patients child or otherwise tell us and help if we can. No test are...

Your points here are very important I think that not only medical profession needs to be targeted but further up the chain. Civil Servants are political and also vested interests. Anyone who sat through the Covid Enquiry would see that clearly. The question we need to ask then is - where is...

It is like the US because that is were the politicians want it to go. Sir Simon Stephens career shows us the control and where the preferred options are. The other issue is Fostering growing privatisation and adoption profits are and how much the Social services are funded by such private...

There are many problems with Neighbourhood Health Service, bringing in Commercial healthcare and insurance companies is the one that gets missed. BACME need to be investigated

Seems odd that they only have ME, I think this needs to be taken up as an issue?

I was listening to BBC woman's hour and was appalled at the Nonplacebo, targeting women who are influenced by information given about the treatment researched. It seems to me they have little to no understanding of research, women's bodies, pain or healthcare in general. Anyone thought about...

I did not know it had been referred to the Law Commission. Have you any links? I did engage and participated in the in the NHS England gathering of information and I did not hold back on the reality of the situation. I have written to the Family Courts when they were debating to make the...

Also look at her research, I think FITnetNHS trial shows how parents can be blamed if no improvement

Longitudinal studies will only show the lived experence if they are recognised and data collected and the understanding of ME is known, this does not happen. When I first started to talk about PEM no one was, yet PEM is crucial to understand and opens the eyes and minds to the situation of the...

This was an old program and one in which I was loosely involved in. Sadly those that were involved were disbanded but I do know individuals still involved with supporting parents/mothers who are targeted

Yep, Government and all the rest

I am very guilty of derailing as everything intertwines and your arguments are solid and sound they just don't work for many reasons. Happy to discuss further and show why it does not work on a different thread, suffice to say that there is no collection of data or oversight for a reason.

If you follow how the disease has been presented and then follow how FII was introduced you can see the protection it gave to the many Drs that treated young people and then saw a decline in their health and why we have no figures of harm.

Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and...

Just had a look at the SMC post about this and it was a well yes but from Your work and findings plot and map the many problems that those with ME have been explaining and living through so a huge thank you. I know you are busy but I need to ask Where do we go with the unknowns because they...

Can we sock DecodeME to them now?

No money in it, they need the narrative to enable research and treatment not to mention wellness industry and protection. This is on a different thread but the same sort of it is there but not hocus pocus...

Fluff buckets this needs a lot of unpacking and several buckets of coffee. This seems to be introducing the idea that excitement is an emotion that impacts health in a negative way. Foer those with PEM that would be correct and this is what they are working on, to hide and stop diagnosis and...

I haven't found any, the state knows what it is doing that is the problem, this is why there has been no change for decades. There are good people out there but they are targeted too