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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...

These conditions are only my area in my advocacy work. I am no a professional in any meaningful sense of the word just a mum (and I like that term "just a mum" it should hold a lot of weight and clout) with experience of others who are mistreated, face Family Court and a broke system. The...

This is the reason we need good solid data on it all. Bendy joints (especially if a ME patient becomes more bendy) , POTS, Mast Cell or autoimmune. The Beignton score is outdated and only should ever have been used in research. We have now missed decades of data that would have shown us the real...

From my work with those needing and EHCP with EDS this is transferable to Fabricating or Inducing Illness in a child. You ask for appropriate assessments or support you have nowhere to go as those who supported EDS are targeted and some have been taken down. The lead person you would turn to...

This is compounded by allowing bad research or research written in a way to support Government preferred corporate dictions (which is what we are seeing with Covid enquiry ) along with vested interests the situation is dangerous to the patient and harm is all around us.

I understand that it is the whole profession. I also get your experience about education and the GMC. However you/the public have to start somewhere and it is because the public have not been involved that the problem exists with opinion. The body tells us what with data? We have no data! not...

It is a murky mess and difficult to get to the bottom of things due to not being given the information fully and with transparency. My point years ago - if they decide what Drs are qualified then they should have control over the trainers of those Drs? Simon Wessley was one such Dr. My comments...