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By the sound of things listed here and on all forums in social media a forensic examination of those who know EDS hEDS POTS Mast Cell autoimmune diseases and now microclots and dig deep and see if we can lay this as organic biomedical ignorance or a patient that is having a hard time either way...

The problem here is that all young people hide the fact they are in pain, especially when they dismissed as they are with clinicians. This fact was proven by the NICE guidelines. It is also hard as a parent due tot he accusations and default setting of Fii to get over the complexities when you...

I think you are wrong. I think I think they are both huge in the ME and in other conditions and it needs to be noted. The symptoms get dismissed and the connections are not made and children suffer not just in ME but in other diseases too it has to be known and brought out in the open talked...

Then you have to explain to me why you are so against it because there is an explosion of young people being taken and adverts for foster carers for children with complex conditions. Trust is already broken in the denial of symptoms by doctors that young people experience. We need to...

The problems arise from not needing any evidence when suspected and confusing everything and allowing everyone to accuse mothers or their children with what they term Medically Unexplained Symptoms or Perplexing Presentations as fabrication or Factitious and not understanding the difference. Why...

So what you are saying is that the genes could be part of the IBS or and ME and it is the gut brain barrier that causes the anxiety or 101 other interactions in the systems that impact mood. One of those impacts include; for me anyhow my 'bad mood syndrome' is not enough coffee. I wonder if...

The fight for balance on the committee was an important one, and one we should revisit because it shows the imbalance of how ME is treated, misunderstood and the total lack of research and the difference between Long covid . This is where we keep fighting. Perfection as a target is forever...

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look...

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look...

This posts and following posts have been moved from the NICE guideline thread. That made me AngreMad. It is the case all over the UK that they just diagnose and then you self manage. Has anyone looked at this? I normally support families where I have to fight off intervention of the very nasty...

I think it was prewritten possibly hoping they would get their way but also to fight back if things went wrong for them. Over the years they have felt they could do what they like so why change now?

Sadly I would say she had no hand in writing the NHS website; I would say this was a preplanned release. Let us hope those who preplanned the release are the ones that get into trouble. FOI to whom authorised and asked for the writeup? I would also say that about most that attended. It is those...

I don't see the charities making any effort to go against the establishment otherwise they would have done this decades ago. As far as I understand the Law which is very limited ignorance or incompetence is no excuse. With the round Table, the release of the Association of Royal colleges and...

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