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I could have it entirely wrong because I'm just guessing here but I see it the other way round. The BPS group are really just richly rewarded (for doing the dirty work or at least supervising it) handmaidens to people higher up the food chain. I don't really know the structural workings of the...

Here's what I want from one of these ubiquitous studies. I want one of the PI's to have intractable long term tinnitus (or whatever) and have them be part of the study to see how well it really works. I'm just venting as usual but I have really bad tinnitus and have had it for decades. I'd...

I think there is a different way to look at this particular article. I don't think it matters so much in this case. Whatever this person believes clearly it won't change regardless of any evidence to the contrary. The timing is interesting-- to stick your neck above the parapet just after a...

I've been having trouble keeping up. Really interesting discussion. While I have no way of knowing what is or is not good research I'd like to offer a suggestion for a piece of research to replicate...

Twitter seems to agree with opinions here.

In response to @Tia I don't disagree with your point at all. It's certainly true for new people but this could be dealt with at least as efficiently and for a lot less money by having the relevant info in a flyer or directing people to a charity or a support group. That cuts out the...

It seems clear to me that there are far too many people in the field of sports science. How else to explain all these various groups doing experiments in ME. Don't people who do sports or need rehabilitation need their expert research capabilities? I'd like to know what flea in their ear...

In a better world they would record sessions and have them under tight internet security with appropriate laws in place so that the only time they could be accessed is when a complaint is made against either party and sanctions for making spurious complains.

Don't forget one of those voice modulators that make you sound like Darth Vader. ;)

It sounds like Steve Brine was not up to speed with the facts but had an education in the feeling of suffering. All well but for a Debate facts are kind of the go to item to put forth a sound and unassailable argument. Talking feelings can have a use but belongs elsewhere.

Hi @Melanie I've had both fasciculations and the internal tremor for literally decades. They are core symptoms for me. For the tremor when it's bad I take a muscle relaxant or two and lay down. It's helped me. I can't do this as often as would be useful as I'm concerned about overuse of the...

I'd like to correct a comment by SW. Although not about the PACE trial for which I have no expertise and is being well and truly skewered by others. SW said in a tweet copied in this thread: 'Cant answer for DWP. Wasn’t there. But It has a legitimate interest in helping people get back to...

Perhaps there is an issue as to who might best benefit from the message. I agree that to try and discuss this with MS et al is a total non starter (IIUC that's what's being discussed). While it's hard to quantify and present hard data the parents/children families that have been affected may...

Exactly my problem. I am fucking furious. I don't want to be. When it comes to other aspects of my life I can be like anyone else and quite reasonable. But time has also taken it's toll. And that is directly down to the small cadre of BPSer's who in the first place stopped seeing the people...

I'm not at all sure I want M Godwin weighing in. He seems well versed in a general and possibly superficial way in these issues but it may be that his allegiance to the powerful Old Boys Network could prove problematic when it comes sown to making any kind of statement. In fact, he has not...

Not sure there is a who but a what. I think that institutions that benefit from his perspective will rally round. Institutions are made of individuals of course but they act as a united collective when threatened and when their livelihood is threatened then they respond with a collective...

That is a brilliant letter. I hope that it has some effective results. Since I'm not on facebook can someone explain where is this letter posted and who might be reading it. Also, from the letter it seems that the point is education and not some other specific actions?

@JaimeS Congrats on this posting. :party: :balloons: So glad this is happening. I look forward to all the smart science people coming together to discuss all the important issues that will help us all get to better days. Thanks for all your efforts.

This isn't an episode of 'The Walton's'. So long as we follow the forum rules we can disagree. When people are attacked for have a different opinion and some people won't let it go that becomes harassment.

Maybe making a final comment (yours) and not ask a question rather than giving MS the final word on his terms. So, stating that he did not adequately answer questions regarding outcomes and recovery numbers (perhaps with a link to why they are suspect) would be a better option.