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Brilliant initiative by Skye councillors - could your council do this too? Best way to gain understanding http://www.theskyetimes.co.uk/index.php/3520-councillors-to-spend-day-in-wheelchairs-for-wheelchair-awareness-day

This is the route we are going and why there is such cognitive dissonance. Fatigue in MS reframed per PACE paradigm

@dave30th would any of your letter's signatories be prepared to resign this? Or could you round up a new letter would any MPs be prepared to sign this? Can we tweet once posted to maximise exposure I think to gain as much traction signatures need to come from outside the " ME bubble" The...

I wonder if UK biobank could extend its remit to facitating this?

It i am woefully uninformed re ECT, other than the effects it had in this instance. It was not effective for this woman. Would two teenage boys in their first year of university have lost their mother if another approach had been adopted - we will never know. Would ECT have been proposed if...

I only know of 1 person who had ECT. They were an ex employee of my aunt who fell into a deep depression after her second marriage ended ( her first husband died of cancer when her twin sons were young) . It offered a brief respite - she took her own life the folliwing year . Therefore whilst it...

Here it is reserved for thise whose test results indicate issues - to check extent of damage. You do mot have a hope in hell of one on the NHS if tests are within nirmal ranges and they are not that prevalent privately in our location. It seems to be that there is no clinical significance...

You are welcome. I hope that you can find and access something that helps .

The BH4 angle might tie this into Rich von K ' s theory re folate availability. If folate availability is poor , homocysteine can form methionine via BH4 , this may compromise its availability for other reactions ?

De Vega has done a number of papers on glucocorticoid function - they are all listed on ME-Pedia, with text access : the epigenetic paper of 2017 may be of interest given you have your WGS https://me-pedia.org/wiki/Wilfred_de_Vega The low T3 paper suggests a hypometabolic state ( perhaps a...

Sadly people can get " parked" on them

The adrenal issue is key. From posts here and the other place adrenals seem a poor cousin to thyroid issues, yet failure to address adrenal issues will screw a lot up.UK does not seem a wonderful place for endocrine problems, though i' m sure there must be some good consultants and it may be the...

Didn' t work for my daughter. Set her back 6 months , but she dosn' t have POTS. There are glucociglucocoid sensitivity issues for some. Check out papers by de vega (?) You could perhaps x reference genes from your WGS to see it you may be affected.

Plus ca change ...

Perhaps the use of a third party for recruitment may highlight issues with recruitment...

One for Carol Monaghan's Science and Technology committee. Who funds these kind of studies? Again peer review and journal assessment seems wanting. These are the kinds of studies that charities really need to comment on. It is not acceptable for such poor methodology to continue to flourish...

Hopefully your doctor will be interested too ..

when clicked to twitter message is that page does not exist

I tried to argue for a fibroscan - ( we are now under an endocrinologist as key consultant) ; weird issues with herpes viruses, onset following glandular fever, detox issues/ drug sensitivities , H pylori ( i believe this can be linked to liver function) but his view was that there was...

Crap in=crap out