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Actually I think that's a really good point. I've not considered that aspect before. In the pre social media era, where sick people are unlikely to feel well enough to go round detailing all their symptoms to other people, it is far more likely doctors discussing the epidemic will have more...

You went and said that out loud! :laugh: Bet you an extra tenner donated to David Tuller's next crowd fund campaign that phrase will be appropriated & appear somewhere within the next.....let's give it 4-6 months.

The easiest way to be clear about that is have separate private and professional accounts. Some organisations might still start disciplinary proceedings against a person if they publicly say something in their personal accounts that reflects badly on their employer. Especially if they have a...

Blocking people simply because they disagree while at the same time bemoaning the spread of "distorted facts" are stances that are not compatible with each other. If a person wants the truth to be known and not distorted and believe their grasp of the "facts" to be correct then engaging with...

I've recently realized that for me this tends to happen once the effects of adrenaline have worn off. Particularly when I've pushed a little and then you get that very misleading feeling of wellbeing that deceives you into thinking you're okay to carry on doing whatever. The come down from...

it seems to me one of the issues with trials and RCTs and so on is that of vested interest in the result. There seems too much interest in a specifc outcome instead of interest in having questions answered, learning more about diseases and biological processes and raising new questions that we...

Reading this with the BPSers in mind it strikes me that they're the ones twisting the facts and data in their own research. The SMC have a history of regurgitating the "facts" as presented to them. Much of what is said about their research by patient groups is in fact, fact. They have a habit...

Some information on living with allergies and the coronavirus vaccinations by Allergy UK https://www.allergyuk.org/about/latest-news/1374-allergy-and-the-coronavirus-covid19-vaccine

Looks good. End of second paragraph - I'm not sure if the number 2 is to indicate a footnote? If so I think this maybe should be footnote 1 as it's the first and there are 2 instances of the number 2 appearing.

Yep. I agree. I also suffered chronic fatigue due to a poorly managed thyroid and untreated anaemia. Without ME and with correct treatment both of these would be effectively managed so that a person could live a normal life, even if they can't be cured or might recur. Exercise would have zero...

Does she define recovery anywhere? Is this recovery where you can be worse off than when you started?

Yep. This is true but of those people how many would choose an illness where they won't be believed anyway? Why would you choose the one illness (that I can think of anyway) where they'll try to insist you push through. The illness that has commonly been seen as a person just being weak or...

Sure, me too. I don't believe there's been any rigorous research though. I have had quite a lot of contact with a gynae over the last 5 years or so and he seems surprisingly clued up on ME & the effects of gynae interventions on ME patients. This leads me to suspect he sees quite a few...

Yes, it would seem to me to be victimisation or someone with a bee in their bonnet. It could be a change of personnel at the council. I know that some people seem to believe that ME patients should not be given aids or support as it just encourages false illness beliefs, so I suspect that may...

I suspect the honest answer is we don't really know. It's a possibility but everyone has been so busy trying to ignore the impacts of the disease for so long as far as I know there's been little to no research on ME and gynaecology, let alone in precise stages. The MEA (I think) had a download...

That right there sums up the difficulty of almost every interaction with authority or agencies that are supposed to help when you have ME. I have family members with disabilities and long term health conditions. The worst that happens if they ask for something is they don't get it. It never...

Read it this morning. Excellent, thank you! :thumbup:

Yes, @Karen Kirke 's seems paywalled but the Adamson paper is available. i even checked down the very bottom of the Adamson paper where it lists some similar articles but Karen's isn't listed there. Yet. Congratulations on getting it published.

Thanks @mango! I understand that this started out as a pain and fatigue study and then evolved. It strikes me he doesn't understand pain in ME very well either. He refers to it as diffuse pain & it is true there is often a lot of what I call background noise with ME pain. It hurts all over...

Shouldn't that be- "Helsinki University Hospital's Outpatient Clinic for Functional Disorders treats ME/CFS patients badly?" Not terribly surprising I suppose.