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Yes, even if something is a dead end then curiousity about the condition and careful observation & documentation can still add to the knowledge base. They might even lead to further questions, opening up new avenues of research.

Yes, that fluff is all very well isn't is it? What about when people are in the early stages of an illness that takes a long time to diagnose or for which there are no biomarkers and those too ill to work? It's not necessarily about the supportive management and work environment, though of...

I suspected that was the case but wasn't entirely sure of my memory & so didn't want to cast any aspersions, just in case. Thw whole thing is a farce anyway from the employees point of view. One of my employers OT tried to make a big thing about me not having handed in (well, posted) any fit...

The doctor's input is by way of what is now ironically called a "fit note". I don't think the guidelines will change much about the way people areleft in limbo in terms of career planning and si forth because it's not as though there's currently a treatment that will make things better. Just...

Not in terms of state benefits. There isn't any flexibility built in. In PHI terms (policy that covers people unable to do their previous jobs) - these policies are not considered as partial retirement and the claimants are usually subject to regular reviews similar to those carried out by...

This suggestion is a fairly obvious one. Remember back in the.....70s?....Robert Winston, I think it was. They picked children, can't remember how they chose 'em initially, and then followed up with them over decades. I would like to see this or something similar. Perhaps pick children of...

Okay, this may win stupid post of the day award but as that doesn't usually stop me.... Are we making a big assumption here that there is a relationship between what happens when exposed to an allergen a person is sensitive to and the underlying pathology of ME? Admittedly if you have ME and...

Yes, not just what they're doing, It's almost as though they're crystallizing all that was wrong and stigmatizing with the approach of the last 30 years and summarizing it in one sentence. Clear implication that it's patients' thoughts at fault and patients' character defects, willfulness...

Does anyone else find the "Think Right from The Start" slogan offensive?

Are there any ways in which complaints could be made? If they are claiming to be carrying out research but haven't had any ethical review then they have not had to demonstrate how they will define or record harms. That is extremely worrying because however low standards currently are they won't...

[Bolding mine] And there you have it. No ifs, buts, or caveats, whether it's appropriate or not that's the goal, increased physical activity.

This comment isn't directed at anyone in particular. For those who do read this thread and feel judgemental about people, patients, airing their views and how they feel about comments made on twitter that refer to the disease they suffer from, the type of people who get it and so forth..... I...

Yes, when it comes to the professional skeptics it would appear who says what is far more important than what is said. Might as well just call 'em Rent- an -Opinion.

Wow! How many years of med school etc and this is quality of the pearls of wisdom he has to dispense. I hate to say it but he's starting to.make Sharpe's logic and arguments look quite good by comparison. Never thought I'd see that day...... What levels will he limbo under next - trust me...

Wow! Maybe if I recover one day I might be well enough to give this a go? On the other hand if I could consistently do that much I'd probably go looking for a part time job, earn a little cash.

Hi @Skycloud, no, sorry it wasn't meant to come across that way. I merely quoted the words that spawned the thought behind my post.

He does have freedom of speech, of course. He also abuses it. He uses his position as an emminent professor to get himself attention from the media so he can get away with talking utter tripe because it's from his perspective as a patient. Enabled by certain news and media outlets. Anyone...

Naturally, I don't condone death threats threats of violence or attempts to intimidate in any way. However, Garner's reaction to his illness seemed a bit hysterical to me. Quite unlike how many of us reacted when we first got sick - we had faith the medical profession would help and support us...

Wait. I thought we had too much awareness..... Concrete goals for a fluctuating condition. What could possibly go wrong? Can you be too cynical and have ME for more than 5 minutes? And just think of all that lovely data they'll gather about you along the way! €€€!

Good question. I am concerned at the level of stupidity and selfishness I have seen and heard about recently. It doesn't give me any hope that we won't be plunged back into some type of lockdown. Recently IM and I took a trip to the garden centre. A lot of it is open air but there is a large...