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Has anyone responded to this? If not maybe worth contacting Tymes Trust for info on youngest children @dave30th

I’ve ordered a mask in suffragette green & purple stripes from radical tea towels not cheap but I will enjoy wearing it.

Heard back from M E Association that they are indeed aware and raising it with authorities.

I bet it did. Made me smile to see your summing up of him for what he really is.

This is making me fume they are just blatant. And it doesn’t give much faith in James Lind surely they should be insistent on the patient engagement side that’s supposedly what they are there for. wondering if @dave30th would be interested in this latest snake from the MUS hydra head.

What patient organisations are involved in this? It should of course be a wide range. But if this is the first we’ve heard of it looks like they are attempting to fly under the radar. How did they recruit the patients? the survey needs sharing by ME organisations. People with ME need to...

Oh good grief can you tell I’m not very ‘alert’ today :whistle: sorry @Robert 1973 and @Simon M

Great work @Simon M :thumbup: hope that raises a few eyebrows

so it’s a pyramid/franchise - not Very successful as it’s been going 15 years and only got 15 locations - assuming it’s one ‘technician’ at each location. https://www.rectoryhealthcare.com/join-our-network/

Yes full of tripe I reckon

If desperate people will try anything

I have emailed MEAssociation in case it’s not on their radar.

@Jaybee00 i echo what @Barry said about PEM. Like his wife I’m at the ‘mild’/moderate borderline. I experience my worst level of PEM as a flare up of flu type symptoms/laryngitis/swollen glands which means I have to spend more time in bed or on the sofa but I’ve never been so ill I couldn’t get...

https://www.simplytreatment.co.uk/treatment-process/ This organisation popped up as a promoted result in a google search I did. their 2 or 4 hour process involving a ‘scan’ is claimed to be a treatment for a shopping list of conditions including ME........ which seems plausible - not I...

I don’t think that most patients are that aware of the different criteria - they will accept the diagnosis given by their GP or specialist. It’s only when you get involved in some parts of the online ME community that you become aware of criteria - in the U.K. people will be aware of the NICE...

Is it done on a weekly basis possibly would be covered in next edition?

:wtf:

Fair point. At least it’s something. I could have been more open to his comments if had had some humility about his own responsibility in the situation. But yes as a chip in that status quo it Is of use. ETA. I suppose change is going to result in similar conversions which we will have to...

Good grief Jeremy Hunt was Health Secretary between 2012-2018. He can’t seriously be attempting to claim any credit for this research existing. Although if he’s claiming that presumably he’s happy to take responsibility for everything that’s wrong with the status quo in the NHS approach to...

As gradual onset only getting diagnosed approx 10 years after my health started deteriorating noticeably I’ve got a few possible triggers none of which were followed by anything that seemed to be anything approaching ME symptoms first bad gastroenteritis followed 3-4 weeks later by chicken pox...