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I agree that it's the bedrock of responsible medicine. I just think there is more nuance when many clinicians report similar value in similar drugs globally for this population yet there haven't been proper clinical trials conducted because of funding. Especially because there is worse forms of...

I do understand but I'm guessing we disagree on what constitutes the term treatment. I was asking the questions to better understand what you meant. Children also die from picking up analgesia so I'm not sure if that example is necessary. But I get your point on analgesia having trials that...

Not sure who you are referring to when you say 'fail us' but I only have one vote amongst 20+ others. And this is just to vote on a a recommendation to someone who may not even listen to us. The guidelines committee doesn't have the influence to be solely responsible for the outcome, one...

Yes I agree with this. I think maybe you're missing the context of my discussion with Utsikt. They propose that what a doctor thinks they know isn't actually true if a robust clinical trial hasn't been trialled in that patient population to prove that treatment does actually help these...

Right, but based on what I understand from others in this thread, nothing should be promoted by GPs for ME/CFS as no trial has proven that anything works yet, not even pacing. This rule extends to comorbidities like POTS that also don't have clinical trials on even the base treatment strategies...

This is all that I'm saying though. I think I already said this early but I'm not talking about guidelines here or at any point during this thread. I don't know why you keep bringing it up? Perhaps you missed it when I replied to you at beginning of thread. This discussion has nothing to do...

Well what you and I agree on is what should happen in an ideal world. What I'm trying to say in the world we are in there is already advice being circulated on treatments or management strategies to trial. So at what point do you attempt to try sift through that advice to find better vs worse...

I felt you implied it in your statement about how very obvious and logical it is to not over exert but it's not all that logical if over exerting isn't obvious or consistent. But ok, I understand what you mean here.

I just said "no one is making an excuse for it" and then you ask "how does that justify it?". I don't know if you're reading all of what I'm saying. I get the feeling that you're misunderstanding me and skipping past things I'm writing that would help you understand me. And I feel like I'm...

But the pattern of symptoms don't always worsen after all exertion. If it was easy and logical then PEM would rarely occur. Which might be true for some but not all.

What do you mean provide support and advise? What does that look like? No management with medications that haven't been trialled in that disease? No pain meds? Nothing that hasn't gone through clinical trials for that disease? I am aware that it's largely quackery, I think what you're saying...

Pacing isn't simply rest, that might be common sense. It usually requires some intervening information on how to do it. Most patients without advice on how to really do pacing will simply rest and then when feeling better they will be active again. Just listening to their body gets them in to...

That's not just the rhetoric of therapist professionals, that's the advice of standard GPs who don't know enough about the condition. No they go in to specializing ME/CFS because they usually know someone with the condition and want to help the many without help. It's far easier to be a...

It's not any different. That's my point. People already suggest things without trialling them. So you're equating any non-trialled advice or recommendation as equal. Giving something with a high risk of harm and few reports of helping patients is equal in your opinion to trying something with...

Unfortunately pacing isn't common sense. Get outside more, exercise, socialize, improve diet, get psychological therapy. These are usually what default advice looks like. Specialists in some fields make a lot of money, specialists in fields like ME/CFS don't. They actually make less than...

But clinicians have been prescribing it, for decades. Treatments get trialled on patients already if they have minor side effects. Only the treatments that are seen as risky or very expensive have rapidly gone in to treatment trials for ME. Sounds like your position might be that without...

So you don't think management strategies like pacing should be trialled? I mean without the PACE trial we'd probably have many more patients on GET. What if pacing is doing more harm than good longterm? We don't know and yet some advice you feel comfortable providing, why do you think that is...

No problem at all Peter. We don't have good trial data and yet some medications already get recommended like LDN or advice is given like pacing or avoid PEM. Clinicians try many things on patients over the years but these stand out as getting ongoing positive feedback in ME/CFS and have even...

The research field is even smaller than ME/CFS but yes specialists say that most people gave milder cases where treating POTS with salt/water/compression is enough for most to resume life quickly. Often the severe POTS patient are those that have comorbid ME/CFS or long COVID. Those are also the...

Then why does treatments to improve the postural tachycardia improve the POTS itself to a point of being managed?