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Radio scotland have at least one such programme/ year. The two previous ones have been on "Call Kaye" which are a feature and phone in - the response is always good and really underlines the " most common uncommon disease" aspect.

I forwarded PDF copies of this to GP and paediatrician. GP is now up for looking to improve function via looking at comorbid conditions . Paediatrician would not divert from NICE guidelines ( even though we are in Scotland and there' s a wee bit mire flexibility in the wording). I don' t think...

It seems it is easier to propose Munchausen by proxy for females, this enables the sate to intervene. If anyone knows of MBP being mooted for fathers/ make relatives, feel free to correct me. Having been back to PR to check Countrygirl' s posts it is apparent tbat i have picked the post up...

Some of the best explanations for vit D function, choleresterol and carb metabolism i have found on the fat emporer blog. Some people, due to lipid metabolism problems simply can' t do ketogenic diet - it dosn' t work for everyone, but i do know people who have improved function on keto...

It' s the relationship between hormones - insulin, ghrelin and leptin that modulate hunger and " full" If you eat a lot of processed carbs the " tuning" of the relationship alters - easy to read explanation www.eattoperform.com/2013/05/10/myth-insulin-makes-you-hungry/amp/

This is the UK. There is only now an enquiry into the contaminated blood scandal of the 1980s - cynically probably because some people have died/ retired. This is not a lone incident. Both Tymes Trust and AfME deal with numerous issues with children - many re school and social services but...

from the case I highlighted on PR pre Christmas - a depressing update posted by Countrygirl -http://forums.phoenixrising.me/index.php?threads/the-psychobabblers-strike-back-with-coffi-crawley-white-moss-morris-et-al.57276/page-2#post-950040 "For example, a mum has recently lost her legal rights...

Seems to be a potential development from thus thread- scoping for funding? https://www.s4me.info/threads/the-international-collaborative-on-fatigue-following-infection-coffi-january-2018-katz-et-al.2013/page-2#post-36337

Thanks !! :)

Do you have any links for this. There is more chance of scottish government looking to europe than England!

Nissai is a good option. They " get" ME. ( They have a part time primary teacher who has it). I' ve met with founder and their development officer with tymes trust to try and get this option into scotland. Aiming to get a pilot centrally funded over a number if councils . Here, over my local 3...

No, but will see if i can find it

We turned up to s paediatric appointment in a wheelchair and this was noted. At the previous appointment we could not get parked anywhere close to the entrance and my daughter had " palpitations" that evening - she thought she was having a heart attack. As my aunt had experienced this on...

There are very few specialist centres in Scotland. East Lothian Council run a service which they advise ( vocuferiusly) they see people doing very well with GET. I do wonder the reliability of original diagnosis. This is a joint funded operation. Edmesh are the local support organisation and it...

To illustrate the farce - there was a post on the "supporters of Dr Myhill" 's Facebook page last year where someone had been assessed as being " fit to work" for 12 mins / hr. They posted a picture of the assessment. Who is going to employ anyone ( let alone someone with a disability) for 12...

Ah - but there is always MUPS and a plethora of other conditions for which CBT is being positioned as a treatment. No doubt an exercise arm can be added...

I can relate to this. My daughter developed sensitivities post chickenpox and glandular fever. Seems to be linked to liver/ sulfoxidation/ sulfation ( phase 1/2 detox sysyems)which impacts methylation, hormone synthesis, glutathione availability. Recent H. Pylori can be linked back to liver...

Given the age of the participants, was this discussed and agreed with the parents too? Where do the parameters for information sharing and consent stand? There were problems with the scale too as it did not relate to teenage activities. Given the amount of research that has recently been done in...

I think this is a huge point. The condition label effectively writes you off with some doctors. Our GP is trying to be helpful - in part i think because my daughter is young, and in retrospect the practice were awful when my son had post viral fatigue. My aunt who is bedbound and has other (...