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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 The Beignton score is outdated and only should ever have been used in research.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...

My response to your well thought out reasoning. 1st there must be data. We have no data on numbers of those with ME or how long they have had the illness and what treatment they have had. These figures would speak for us and we need to make sure they are properly kept and overseen. Your point...

Thank you for this information

Jon Stone and Alan Carson are editors on the BMJ? who they were trained by and the foundation of their knowledge is important and well after finding this I need a bucket of coffee. How long has the name of FND been coming and why? What research are they able to influence medicine on? It would...

Does anyone know? I asked Sonya about the talk given by BACME. she advised me she did not attend and I questioned this as she was on the agenda to give a talk so what is going on? The mins have not been released from June so it is a right snake put of a muddle

They are saying only 3 "For the first time, to our knowledge, we provided evidence showing that miRNA expression levels miR-127-3p, miR-140-5p and miR-374b-5p could be potential biomarkers for ME/CFS and FM illnesses. However like cancer and other diseases the circulating dysregulation can...

Right so we have to start to unpick what is actually happening and what we think with a bias mind. So how many young people diagnosed as ME with PEM have Fingers that bend back or go into odd shapes thumbs to wrist Knees that bend backwards same with elbows And can touch the floor with...

Posts moved from this thread: The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread This is the concern I have. Each one of the researchers that look at this is then either warned off or taken down. However there is...