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Just to be clear, the letter, the petition and even the rhyme were a team effort: the team included @JohnTheJack . But you can blame the video on me, although most of the facts have been culled from others' findings. Me, a parasite? No, I'm not even fit enough to be a monosite.

I thought I had fairies at the bottom of my garden. Then I paid a team to carry out a proper, definitive survey and they discovered that there weren't any. But that doesn't invalidate my first suspicions, so clearly there are still fairies at the bottom of my garden.

Hi Arnie! Two reasons. The first is that I am a tired old man who is unable to retain a mixture of information and act on it. The other is that I am unable to retain a mixture of information and act on it because I am a tired old man. If it's any consolation, that is only a copy of the letter...

Yes, according to my calculations, the total spent on research into ME over the last 40 years is less than one month's spending on research into HIV/AIDS. Three-quarters of that is on psychosocial research, so effectively we are talking of one week's HIV/AIDS investment being spent over 40 years...

There's also an introductory video which may be useful: youtu.be/7Y6XFipQigE There's going to be a committee, and there's going to be a new set of guidelines, whatever we do. So we need to make an effort to ensure that the committee is balanced, unbiased, and capable of understanding the...

It's an electronic wind instrument -

Hi @Robert 1973 . Way, way back, in the late 60s I shared digs with a number of musicians, and I decided to learn one tune on each. I managed to strum along to "Ain't got a barrel of money" on the uke. So your advice is to increase the number of instruments I can't quite play? And, what's worse...

But perhaps @Webdog your psychotherapy has left you confused over your true gender. Don't let the mere reality of the biology confuse you: it's amazing what the right attitude can do to a body. I've been practising the Lightning Process for the last week, and every time I think I may be a bit...

Hi @Robert 1973 : there are probably a lot of differences between us (such as age, hair, ...) but the big difference is that I am about as musical as a dead parrot. I'm happy to share any experiences that I had in putting the sunflower singalong together, but the biggest one was that it took...

So, if you were a social worker, policeman, hospital worker in A&E, traffic warden, ambulanceman, teacher even, what would you think about someone who brought up a sob story about getting unpleasant messages etc. as evidence of substantial harassment, and quoted it as a reason for people leaving...

Why? After all, they are the ones who support the idea of false illness beliefs: clearly they have them.

I have the ability to believe anything without draining. Does that make me a doctor?

I have copied out the list of stakeholders for CFS/ME, although I guess that many of them are just on all teh stakeholder lists. I think I have highlighted all the ME patient groups in blue, but I'd be grateful if a couple of you would just check through it for me. Thanks in anticipation.

I'm a very elderly iMc

Exactly! I'm expressing my doubt as to whether measuring the intensity of PEM is a worthwhile exercise. All that is needed is to know that it is there. Surely the sensitivity of the triggers is more important.

Too true: I always appreciate how lucky I am. But I have thought of an analogy. Some of us have fair skin, and burn easily in the sun. Some folk have skin so sensitive that virtually any exposure to the sun causes problems. Measuring the size and severity of the burn doesn't reflect the...

I, too, rarely get PEM, simply because not only do I keep a careful eye on what I do, but so does Kathy. It's very seldom I push myself hard enough to get proper payback. I would find it very hard to describe my PEM symptoms. I'm also intolerant of lactose and of onions, but as I completely...

When I last looked, it seemed that there were 77 or so stakeholders on the list, and only a minority were patient groups/representatives. With such a large group, and with so many of them representing current treatments, I wonder how easy it will be to have a discussion.

There are time we need a "that makes me so angry" box to tick, instead of "like!.

Thanks Paul. I'm noting all the comments, and when/if we get a response, we may well use them in a reply.