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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...

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...