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It is how they look at symptoms such as the Functional dizzyiness pain fatigue and movement you pick out how they can use this to explain classic EDS/hEDS without taking the time to look at joints, gut allergy. FND is a gatekeeping hold all hide it away causing long term harm. The GP toolkit...

I have been stating how children and young people are abused in this way for over 10 years now and it should come as no surprise they are going forward with the full support of the NHS England. There is a big push to get FND centers in all hospitals and I think they have achieved that, I stated...

If you look at the NHS FND list you will find it on there. Each hospital now has FND clinic. So even though you have other conditions they can still get you Functional neurological disorder (FND) | NHS inform | NHS inform

The visible app might give some good data on pacing and perhaps this can be adapted to factor in "not trying too hard" Pacing is complex and individual and we have a lot to learn from listening intently to those individuals doing it and looking at the data. There are days when Angus has to...

I need to work on getting a message across to Patient Participation Group at my local GP for young people with ME and PEM and CEOs to start to get the message across of how to communicate from professional to professional (MDT even between profession to professionals it is hard work) advocate...

Well I am rounding up the wagons so to speak, CEOs of Healthwatch, Co production and Commissioning, MPs and councillors with a couple of Charities that have more to do with education, disability and those that are showing Fabrication or inducing illness (FII) has no foundation. Joining all...

Thank you. It is very difficult to know if you are doing the right thing and most of the time I work on my own without the voice of reason which is always much needed. So comments on here are vital for me and even if you don't comment and just like it is worth it as it gives me the strength to...

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And I do not blame you 1 bit

The rub is how do we get that to happen, any ideas?:) I have started giving talks at Cambridge university to 1st year students but it may take a long time to get to where we need to be. The other idea is the John Peel centre in Stowmarket a sort of lived experience conference which involves...

I agree with what you say about Alasteir Miller YouTube 2015. I'm also glad that you use the term ME/cfs for the reasons you point out. I think that the ME community need to understand the problems from a clinical point of view but the trust lost is hard to gain back. The other issue is how...

The problem with these articles they never reach the right place or used to demand change and that needs to change. There is no science that policy makers will use and we have to start to target that. in 1998 there was the same issues

We have to recognised where the term has come from and how it will be used by both medical profession and the DWP. As far as the CEP test goes I would pose this question - do we question those with Asthma? - There is no need for a biomarker to diagnose asthma nor do patients get questioned...

This is huge and needs to be recognised and understood, especially with NIH study. Also all the talking therapies that are targeting the central nervous system such as the "body scan method" Words are important because used with double meaning is giving misinformation and confusing...

How do you manage to find this stuff and how do they get funding for this? The merry go round of managing 'bloom and bust'

Anyone who asks the question of differences between children and adults in any context needs to be questioned intently What do they term multidisciplinary ? Has anyone actually determined who needs to be part of this group? This is a serious question because they are used normally to mean...

A few thoughts about the questions put to Lord Markham. Sadly this shows quite clearly the hidden truths of the situation? Due to the perpetuated stigma by the specialised services, which has constantly brought about the lack of duty of candour or informed consent due to not explaining clearly...

Leads with Mental Health so that is all you have to know to understand where it is going

I think we need a response to both the NHS and the BACME understanding of ME to Barroness Scott. She needs to undeniable and very public support of those in the community?

The people at the protest know only too well the issues with this piece and it shows well the hurdles and the problems those with ME face. The lack of understanding and training was voiced by the Dean who knew nothing of ME. Both Mark and Katie; the only 2 that turned up out of 180 in the FB...