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Needs to be a court challenge I would hope?

I would say thins is intentional. They will now start their changing the guidelines through the channels afforded to them by NICE. That is why Leng like Baker is stepping down or were they pushed. I would also not be surprised if Carol Black was given the position of NICE

thank you now going :thumbup:

I may have lost my place in this or not seen the link but the NHS have changed their input on NHS and CBT under the heading of treating and goes against NICE with and looks very much like GET is on there too Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) - NHS (www.nhs.uk)

Now why did I not think of that Is it those that financed the guidelines?

We can only keep pointing out they they do not recognise PEM and the impact on what Baroness Finlay called disordered energy metabolism. If someone who has not worked with or researched ME can see issues then someone who has for decades is doing something wrong.

He needs to be reported for already going against the NICE guidelines and as he runs a centre that NICE say patients should go to and DO NO HARM most definitely needs a slap with a wet cold fish. I have one ready

If you watch the family court reform you can see it all happening

They are on a time limit due to JR but if they don't make a decision they hope they can run the JR out of time. Factor in the the NHS are lumping MUS (no research and a name that means nothing) and FND (now on NORD and so they will try to implement and ask NICE to make a guideline without any...

They should have a toolkit as they do with EDS hEDS this is one thing a RT event could be useful for as it has been used in the past as a training aid. If there was a toolkit it would be easier for YP to enable to fight the battles they face.

with all the funding she has she should be challenged on that ? If she cannot fully explain PEM she should be thrown out?

Will give that a go. I have a wicked witch cape somewhere will dig it out and get back to you

It is shocking what they can change subtle changes have big impacts.

If that is the case that was a very clever move in hindsight, but could have backfired so badly for patients. Having been involved in this tossing and turning quagmire that patients have been put through, it was understandable that people were skeptical and in a way perhaps, that is why they or...

Oh how I wish that was how it worked. Firmly pressing buttons is my occupation at the moment and I do wish the computer and others would take notice of my intent.

This is where the research and directed research needs to be. It also needs to call out theories masquerading as facts. Making the public aware of PEM (a lot do already) will enable them to see the problems and as more young people are going through LongCovid, Lymes and PANS/PANDAS then we will...

Right so how do we protect young people from this? As they will and are filtering them from ME saying FND is a co morbidity and some cases taking cfs or ME away as a diagnosis? They have no science to back up as they still are calling this a theory? those new parent are jumping for joy at the...

You might find this useful to listen to how he feeds into our part knowledge. He does not seem to explain the damage and how it impacts of movement What Is FND - FND Hope International

Here we go Functional Neurological Disorder - NORD (National Organization for Rare Disorders) (rarediseases.org)

They seem to accept it. Suffolk, Cambridge filters all those with perplexing presentations such as POTS, ME, cfs, mast cell, EDS etc there. they dont do any testing apart from standard blood tests which they seem to not look at? They have even denied on at least one occasion that someone which...