Search results

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...

I think this is a good idea. I also think it should be done by both. If S4ME on the professional side and then a group on the more person impact side. We just need to keep hitting the truth and hammer it home so the true picture is in plain sight and undeniable.

I just had a looked at the slides and well Fluff a Duck is all I can say :banghead::banghead::banghead::banghead: Slides http://healthcareimprovementscotland.org/programmes/long_term_conditions/neurological_health_services/idoc.ashx?docid=ce6b1be6-3b8a-4732-8885-6adb13311310&version=-1

Not if they suspect FII, that refusal is used against the mother as unwilling to let the child engage in education or socialising. So we find ourselves in a constant loop of Gp and paediatrics not understanding the complexities of ME EDS mast Cell and PEM. They do not believe they are physical...

You are right and this is the difficulty we are finding. Because of the now Health wellbeing and social care are all one, we as mothers get hit from all sides. Notice there need not be any proof or need to show reason, just accuse and pass it on.

Yes it was DR Glaser who was talking at that seminar. She sat on the NICE Safeguarding guidelines. I believe that Action for ME also sat on them or is a stakeholder? Dr Glaser teaches how to accuse mothers/parents of FII though the Royal College of Paediatric and Child Health (RCPCH). There is...

I do not know of any that work in the NHS ME/CFS centres that know and understand ME and PEM.

I agree with you and take your point on board 100% The problem is that when you have engaged with them over several years and in some cases decades there comes a time to call them out? This is not just a ME community problem but also Mesh and 101 different problems with different guidelines...