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Consequences Real conditions not picked up FII accusations increasing Who collates these?

Great video @Adam pwme . Perfectly pitched for those with no inkling. Charities should be using these for awareness raising and education - no need to spend funds commissioning media tools when these , and the Voices videos exist and tell it so well . @Action for M.E. , @Russell Fleming

@Diane O'Leary - thoughts?

this

Intelligence dosn't come into to it. It seems eminence does

FINE is also what the RCGP module seems to be based upon - it would be good if it had wider coverage

Perhaps the most concerning aspect of this is how research is translated into practise - if there is the green light to essentially do as you please without due accountability then it is little wonder that we have the responses in the ME Action survey; those related to paediatrics are...

Between this and Sterne(?)' s bias assessment for Cochrane I fear that future research will get even worse. Who is protecting whom?

I'm sure there have been threads with Mark Edwards papers discussed previously?

The use of GET can result in the diagnosis of PRS (when condition worsens) and children being removed from families

Is Joan Crawford a member here? Might be of interest to her

That's interesting @NelliePledge as out GPs attitude has changed in a matter of weeks. CPD? Professional magazine ?

I think subsets may be relevant given the varying comorbidities and how this may factor in - eg different forms of OI, allergies/ MCAS/IBS. For B12 then genetic polymorphisms may be worth knowing pre trial. Would pre identification and subgrouping not enable finer teasing of info? I don't have...

If something does have clinical effect, then surely there should be well designed trials, which may also help re mechanism? Apologies if being naive. My main concern is that the combination of Fukada and no subgroups may render any trials meaningless.

Thank you Trish. Succinct, easily understood and non ambiguous. That it should be necessary is both concerning and sad. Let's hope that the constructive criticism is received in the spirit in which it is intended and changes are made asap. ETA spelling

I could find no evidence either, and no indictation of how brain development may be affected from long term use, or how mucking about with seratonin ( and dopamine for other antidepressants) in puberty would pan out. That said there is very little evidence for many prescription medicines in...

Amitriptyline is prescribed to 9 year olds with ME. On NHS.

Will PM you

Thank you @Gecko , an amazing achievement . I hope it doesn't take too heavy a toll on you .

I write this as a relative newcomer, a carer and concerned parent, who currently exists in a parallel universe. I have been part of the AfME Educate ME project, which, I hope will have worthwhile outcomes. I found the AfME staff to be genuinely concerned and empathetic and who wanted to...