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copied post What happened with AfME and the PACE trial happened. If they had been more proactive in clearing up the mess they contributed to I think most would be prepared to forgive and move on. However, as we know some of their information leaflets are still very problematic and are...

The timing is very unfortunate but perhaps if AfME had been a little quicker off the mark and proactive in getting its house in order and had dealt with the problems properly when they were raised before then this wouldn't be happening now. If AfME find themselves stretched a bit thin now or...

And he's not taken on any new ideas or thoughts in 40 years? Perhaps he's spent too much of his time patronising other people and lost sight that there's a whole big wide world out there and our understanding of it shifts all the time. Maybe someone should remind him to stop spouting tired old...

Fascinating. I spent a lot of my working life trying get account managers not to raise client expectations beyond what was reasonable to deliver within their budgets. In every other walk of life setting someone's expectations too high will result in complaints and maybe even legal action...

Yep. Hydrangeas can irritate the skin too.as I learned the hard way. I also have a rather invasive shrub that I think looks pretty. Lovely feathery foliage that turns bright scarlet in autumn. When we moved house I took a cutting with me and keep it in a pot. Referred to by IM as "that...

Sudocream is a good barrier cream but also contains lanolin if that's an issue. Amazon have a couple under brand names like DermaCare & Gloves In a Bottle. You'd need to check the ingredients though. Otherwise shops that sell incontinence products might also stock barrier creams.

It's so hard to pin it down..... For me, the increase in fatiguability has a compound, perhaps exponential, characteristic that none of the descriptions quite describe. It's not just the energy available or capacity is reduced by a certain %, nor is it that fatiguability increases by a certain...

I would say an increase in rapid fatiguability is a symptom of PEM, not PEM itself. An increase in fatiguability has also been a symptom of a my ME becoming more severe even when not obviously in PEM (which doesn't necessarily mean I'm not in PEM though). I'm still trying to work out the...

Please excuse my ignorance / dodgy memory but who are they?

Agreed. As you say I think both sets of "establishment" need to be called out. i think in the UK, thanks to our health service, this idea that testing (to learn and understand the disease as much as help the individual) is bad because it reinforces the false belief that the person is ill...

Are there findings that are replicated though? Part of the issue might be that diagnostic criteria were too loose or n numbers too small, or failure to tame into account differences in accuracy in equipment and so forth, but as far as I know there isn't any one thing that we can point to and...

Wow, that was very well put wasn't it? George Monbiot managed to cover an awful lot of ground in a very short space of time without getting bogged down in the details. I'm not great with audio but that was well worth a listen.

I agree we definitely should bring it to their attention. I also agree they don't give a d***. I suspect they fund research so they can say they fund research and are actively contributing to....something. What we should do is make sure to remove any deniability they have further down the...

It's the word conflict that's important here I think. Is it really logical to say that a disabled motorist has a conflict of interest when it comes to parking for the disabled? That a disabled motorist & councillor is less capable than their able bodied colleagues of balancing the needs of...

We humans do like to complicate things! One of the areas we tie ourselves in knots is when we worry most about the perception of fair play, being seen not to discriminate rather than just being fair and not discriminating. It becomes very easy to lose sight of the primary objectives...

Yes, that too & in more ways than one. It's also been known to cause it. A neighbour's grand daughter experimented with it during her first year and uni. That was a few decades ago now. She went from a bright young thing with everything ahead of her to suffering from very severe depression...

Could be they want to learn something about how ketamine works or affects certain systems in the body? Or just compare the reaction of ketamine to the "active" placebo? So, the research is addressing a treatment for something rather than any of the diseases listed? Given that I am assuming...

If either of the disabled councillors had close ties with a company who, depending on the outcome of the vote, would then be tendering to repaint the car parking spaces or repave areas that would be a conflict. They might find themselves in a position where the best interests of the council &...

I don't know if it's still the same but 30 years ago or so if you wanted to see what happened to ex servicemen who struggled to adapt to civilian life then a stroll under Waterloo bridge was enlightening. A colleague & I were visiting offices of a very well known multinational business on...

They do not have a conflict of interest - they have a vested interest. It should be in the council's interest to hear from councillors who can help keep the local high streets alive & the more accessible those streets and their shops are the better for everyone. They have personal experience...