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Have people applied and been turned down?

Well that made me grumpy and I should not be surprised but I have to say I am. It would seem they have reinvented the wheel to be a square. I knew there were vessels but I thought or it made it sound as though they were a second level and although they knew from war trauma units it was best to...

Have we heard of anyone putting themselves forward and being rejected?

I also thought of what Ron Davies has found with the blood cells not being squidgy enough? It opens up a whole lot of questions. I have sent it to him so will wait and see what he says.

I think you will find this interesting https://www.sciencealert.com/hidden-network-of-secret-tunnels-found-in-bones-is-totally-crazy-scientists-say

I think there has been an upsurge in research and acceptance. I also come across this Jo with a few children not even being given tests for this in the first instance and this is causing a big issue for them in later life. I was aware there was an outbreak in the USA but NHS has issued warnings...

There is a new tool Kit for GP https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx I also find this interesting but haven't had time to digest it all yet https://medicalxpress.com/news/2019-05-mast-cells-crucial-osteoarthritis.html

There are a lot of concerns about this. Portraying it as a treatment before it has gone through a trial should have been picked up well before now; goodness knows I have tried. I wrote a blog here about the impact of such a trial...

Whoop whoop that is what we need. Now just have to sort out the courts, my letter is now on the way :thumbsup:.

Do you think they listened ??? I made that point and also advised that those that could not explain Me and PEM should be excluded including those who wrote the BACME severe booklet.

Do we know if anyone has put themselves forward and were rejected? I did write in with my concerns about this and am now writing to the Family Courts as this is where families end up in when accused. The problem with Family courts are that they are secret and no figures are held of those...

For me with the mum's I speak to and the children who are put through so much gaslighting, it is the recognition of PEM that we need to address. The silent slide from our reality to being told it is our children's behavior or our in-print of anxiety onto them. It is like slipping down the...

GOSH closed their CFS clinic who were trained by Porf Crawley. They moved with all the same Dr/consultants I believe to UCLH They seem to follow the BACME severe journal of 2018 that states even when a patient is severe they should be moved or have physio and at the moment children in a very...

Many members of Fiightback have had reports of over ups and false accusations in ME EDS and Mast cell. With children needing tube feeding the reality of their care is appalling. There is another program on 5 Live going out 5th May at 11am https://www.bbc.co.uk/news/health-48151355

There is a program going out this morning on radio 5 live here is the link https://www.bbc.co.uk/programmes/m00050jw Sorry on the short notice and not been on here much but have been a bit busy. I have done another interview with Steve Troop that will come out sometime next week. On gathering...

Good for those with allergies

You are welcome :)

Been tracking my sons for years and you can tell the deepness of the PEM. I even made some videos on the circle of Post Activity Increase in New or Severity of Symptoms

It was a good suggestion and I can imagine how busy you must be with all the stuff and nonsense going on and would not expect you to do more. I was only saying that I think it would be good to tackle it from both angles rather than one.

You need to add Functional Neurological Disorder (FND) to the long list of what to look out for. A lot of patients are being re-diagnosed with it. The mail Yesterday did a piece on a young girl with head injury that was diagnosed with it once and recovered with CBT. Unfortunately she had another...