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Good post from mental elf Reinforces the direction in which we are headed Underlines the serious lack if evidence base for such changes https://www.nationalelfservice.net/mental-health/power-threat-meaning-framework-innovative-and-important-ptmframework/

That' s to change your perception of pain ..

interesting to see the take on GWI, given the biomedical research that has been done in the interim...

Is it just me but- I found it quite " dumbed down" - I don't know if this is to help those with brain fog, or if it reflects the standards of those providing the services. I would agree with the comments raised above.

i would agree with this ; physical growth ( including endocrine system input) takes a fair whack of energy. From parents' forums many children had issues with growth spurts pre M.E. - my daughter had issues with hips and knees, which may also have caused imflammation...... My son had growth...

Sadly little concrete info. That said, a survey may be slightly better than a soundbite. At least it has a basis .

Thanks for your response. It is appreciated. Unfortunately, Forward ME were not really up to speed with the implications of changes - it is very complex, as highlighted by @Dx Revision Watch . Hopefully the meeting will generate a strategy and not simply another letter. Letters work well for...

In vivo lactate imaging for atherosclerosis. Could this technique work for pwme, particularly after exercise challenge given the same aerobic/ anearobic energy shift? http://heart.bmj.com/content/early/2018/04/27/heartjnl-2017-312356

Who reviewed this paper? I am not in the least bit scientific ( my brain works in tangents) , but this is mince - and not even butcher' s mince. A number of points come to mind after a glance.. Was there any recording of harms? Did the intervention force participants to modify activity...

Sadly here if diagnosed , rest is not an official option ....

Link to interesting article on inherent bias in RCTs https://www.tandfonline.com/doi/full/10.1080/07853890.2018.1453233

I think the point is - if there is no evidence to support this claim it needs debunked. It should have no place in a professional webinar, nor any general info.. IMO, the primer figures would be a better starting point.

Thank you for pointing this out - posted pre morning coffee

In retrospect my GP thought that my son also had CFS - he did not have the range of symptoms , and specifically did not have PEM to enable this diagnosis.

Within many official websites and information leaflets there is a standard soundbite that most adolescents recover within 2 years. From the parents' forums of which i am a member this does not hold true. Most children who have ME seem to have a significant improvement ( but not always...

Yes, everything is so damn multifunctional !

Have you had your liver checked? Pretty sure our issues lie in phase 2 detox pathway - which processes steroids .

My daughter was put on a small dosage of hydrocortisone which she could not tolerate ( seemingly cortisol can be an issue for pwme but endocrinologist not aware) Coming off now- headaches, nausea, slight loss of appetite, scaly itchy skin . Joints sore ( note skin, joint and muscle stiffness...

Thanks @alicec This is a whole different ballgame for me!

Thanks @alicec . This will be my homework this week. A nutritional therapist helped with gut issues after H Pylori and suggested DNA analysis. I have report but not dataset, but there would appear to be significant methylation issues . Both MTHFR 677 and 1298 and MTR and MTRR SNPs , and...