Search results

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...

This is my reply to the email sent to me. We believed right from the engagement meeting that NICE was to engage with children who have severe ME along with the adults, enabling them to have a voice from the very start. Why has this not happened? We also believed that mothers falsely accused of...

Has she never heard of Celiac ? Lactate intolerance? etc. What about the Pret incident? Almost all allergies start with IBS along with cancer of the bowel? If Pret can be torn apart then this research has to be held accountable for the suffering and deaths it will cause? On average it takes 13...

They were asked in the beginning to allow children and the severe to have a voice and I was personally assured this would happen. I also put forward that those that were at the stakeholder meetings should have a meeting at the end of each stage. This would have given full patient engagement and...

Trouble is you have to have an understanding of the difference and mostly people with ME do not care what you call it as long as it is understood there is a neurological problem and that it is understood and respected. Being so nity grity with the words we use leaves those suffering open to...

If they have put these constraints on is it down to them or down to the community to find such researchers? My concern is that they have some in the background waiting.

I do love to see a chocolate teapot melt, only it is taking a lot longer for everyone to see. How can they get away with not being able to diagnose and relying on the GP? This should automatically disqualify them from NICE as they do not use heart rate monitors and do not mention PEM? If only...