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 become mainstays in Long COVID treatment.
I think you are fundamentally misunderstanding what pacing is. As I think
@Utsikt said, it's avoiding PEM. It's doing that so as to retain some ability to do things. By 6 months, pretty much everyone with ME/CFS will be pacing in some way. Giving up your Saturday tennis game is pacing. Giving up work or study, or working from home is pacing. Choosing to not have children is pacing. Moving in with your parents and having them deliver you your meals is pacing. Lying in a dark room with no sound is pacing. It's doing what is needed to not get worse. If you don't do less activity, you get worse, and so you end up being forced to do less activity.
That was the major flaw in the PACE trial - they supposedly trialled pacing, but almost all of the participants would have been already pacing, they would have found some balance between activity and rest that did not result in a worsening, and so we would not expect the 'pacing' treatment arm to show any benefits. Ridiculous imposed schedules as in the APT arm is not pacing.
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?
Yes trialling is good but it's expensive and it hasn't been common for ME research to attract that type of funding.
I don't think pacing is something that can be ethically trialled. What would you do - force people to keep working 40 hours a week when it makes them worse? You would find that many people eventually just could not get out of bed. That's the essence of ME/CFS - activity results in an inability to continue to be active. Pacing is basically a voluntary reduction in activity, in order to not get to the point where you have no choice but to reduce activity (and feel horrendous).
Sounds like your position might be that without trailed treatments the clinicians should offer no advice or recommendations. The patient goes through the expense of diagnosis process and at the end are told that there is nothing they can try. Is that right?
Well, yes, regarding medications, if there is nothing that is likely to help. As others have said, there is still a lot of useful things that a doctor can do. The doctor has a lot of power to make it easier for people to pace, for example by assisting with applications for financial assistance. A lot of the problems we and other people with diseases have endured stem from doctors' inability to recognise and admit that they have no useful intervention to offer and to instead provide support.
But pacing is just common sense, it just means to avoid doing things that is usually followed by you feeling a lot worse for a long period of time.
We could probably trial not hitting yourself with a hammer as well, but at some point common sense has to be good enough..
Indeed.
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 trouble. Pacing is different. At least how I define it.
Maybe after resting and being active and getting PEM in ongoing cycles eventually teaches the patient, point of pacing as an intervention is to get the patient to the point of understanding to rest when they feel well and looking for warning signs far earlier than they would land naturally by self-learning.
That is a very patronising view of pacing - that people can't and don't work out things for themselves, that they have to have a clinician tell them how to do it. Virtually everyone can and does work things out for themselves. Personality and circumstances can make it harder for some people to do it than others of course. Where did you get this view of pacing as something that people require instruction in?
Too often pacing advice becomes overly complicated, wrapped up in complicated formulae for which there is no good evidence, focusing on the minutiae of scheduled 15 minute rests, and removing people's agency.
I don’t think we know enough about ME/CFS to justify a blanket ban. If some meds help some patients, they should be available off-label. Everyone has a different risk appetite, and that choice should be the patient’s, not imposed on them.
Some people report improvements of certain symptoms from prescription antihistamines. Afaik, they’ve never been trialled specifically for ME/CFS. In your view, would I not be allowed to request them from my doctor just because I don’t have hay fever? I'm not sensitive to medication and if I don't see an effect, I'll just stop taking them.
OC, no one is suggesting blanket bans. If people research something and want to try it, and find a doctor willing to prescribe it, well, good for them. But, that's not a reason to put speculative treatments in clinical guidelines.
I'm going to say it again, because it is so important.
@MelbME, if the new Australian clinical guidelines contain recommendations for a range of unevidenced medicines and even things like salt loading, for which there is no good evidence of benefit (because you think people with ME/CFS need something, something to try to give hope, or for some other reason), then you and the guideline panel will have failed us.
Please have a good think about what each recommendation actually means for people with ME/CFS. You might recommend CoQ10 and think 'oh, it can't hurt'. But think about how much money people with ME/CFS will then spend on that supplement, how much time they will spend buying it, remembering to take the tablets with them when they travel, and getting up to take it. Think of the effort carers will go to make up the daily supplement collection, use scarce funds to buy it and give it to their loved one. Think of what doctors in a hospital will think of someone who comes in with their collection of supplements. Read our thread on CoQ10 and think about the evidence. If you are recommending CoQ10 for inclusion in the clinical guideline then I think you have not taken enough time to review the evidence.
Salt loading is not without risks - many people are recommended to reduce salt. And again, it's an imposition on lives that are already deeply constrained and difficult. Trying to follow these unevidenced strategies can make us appear to be odd hypochondriacs. You must be sure that each recommendation is worth the cost that will fall on people with ME/CFS, because, when you agree to those recommendations, you yourself are playing a part in imposing those costs on people.
Being on that committee is a substantial responsibility. To all the members, please be sure that you are putting an adequate amount of time to it to do a good job and are not simply going with ideas that have been around so long 'they must be right'.
