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 The Beignton score is outdated and only should ever have been used in research.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

This is the concern I have. Each one of the researchers that look at this is then either warned off or taken down. The latter part of this post shown in grey in the quote box has been copied to a more relevant thread here

Posts moved from this thread: The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread __________________ I wonder if they ever did anymore with this study? Frontiers | Signs of Intracranial Hypertension, Hypermobility, and...

Again I must keep reiterating the importance of the joints in young people with problems with holding pens, walking and generally in the lower limbs, asthma, autoimmune like celiac and mast cell hEDS or EDS is not rare it is not recognised or understood and is most definitely under reported...

It had happened at the beginning of the process and could have included CBT and GET in the guidelines if it was not for the determination of those putting out the truth, asking for FOI and willing to go to court. It could still happen as GPs are just doing what they have always done and most are...

I believe most of the charities were also on the guidelines such as Action for ME. I know RSPCC and Dr Barbados do the Dr Glaser safeguarding course at £25 a throw and in which everyone has to partake. We saw with the ME guidelines how they involve those stakeholders, so they can sign off their...

MAKING SURE RESEARCH WORKS AND THAT THE PUBLIC ARE PROTECTED ! If research produced 1,339,789 false positives impacting on our children should we take it seriously? Unchecked unaccountable. Is is about time someone started to listen to ME? FII and Perplexing Presentations: What is the Evidence...

Moved posts If CBT worked then it would have worked with education and brain training with intelligence in the UK going up, it hasn't CBT for Externalizing Behaviors: A Multi-Tiered Approach (wsasp.org) where do they get the research from? The fact is it does not work in any setting the most...