The ME community can harm patients

[alex3619]

If you don't have positive expectations, I don't think the placebo effect can occur.

I am not sure about this. I think sometimes it might. However it depends what you mean by placebo effect. If you consider it only a psychological reaction, for which there is at best dubious evidence, then yes. However the problem on review is these studies tend to be seriously flawed. Its not clear what the effect actually is. Its entirely possible its merely an amalgam of errors and bias, as already mentioned. It might be mostly myth.

 

[alex3619]

A false appearance of improvement can easily occur just by selecting those patients as study subjects that are in the middle of a flare up. If we only wait a few months, we will find that most patients report feeling better compared to the beginning of the study - even if the treatment being studied is totally ineffective.

This is a variation of one of the arguments I have made for how quackery operates. It does have more of the flavour of quackery by design though.

 

[alex3619]

Anybody can make up success stories and testimonials.

Going back to my argument about quackery, you do not need to make anything up. You only have to report the most successful cases. Even if there are only 1% successes, and none of it can be proved from the "treatment", you can still report these people improved after treatment.

Or apparent successes. There was a case where a large number of patients reported a cure for cancer using laetrile. It made international news (they were in Israel). A year later a reporter went back to interview them. They had all died. Of cancer.

 

[alex3619]

How do you know the severe did not start as mild?

I started as super mild, sub clinical. I kept trying to exercise. I kept getting worse. There were other factors as well, so Its not clear its all due to exercise, but consistent overactivity clearly produced some problems that lasted for decades, and still continue today. So some of us have the experience that over activity is detrimental.

The issue with very mild patients is their threshold for exercise is much higher. The second issue is that pacing is about doing as much as you can safely do. If that includes some exercise then you are fortunate. If you have found exercise that does not exacerbate symptoms then you are fortunate. Its about the patient, and their response, not "exercise is bad". Indeed I think if you ask many of us we will say we wish we could exercise. We miss it.

 

[Snowdrop]

@panckage

PR is a pretty big forum. Huge in fact and you seem to have not been here all that long so it's possible there is a lot as yet unexplored by you. I have often found the opposite. That advice is offered that is levels above my ability to function.

There are plenty of people here that can still go out and do limited things (although exercise isn't one of them), that's a different functioning level from some others. If everyone here seems severe to you that might suggest that you should be looking more carefully at excluding other diagnoses.

I've been sick for decades. I can assure you that even when mildly ill exercise always had consequences

 

[Scarecrow]

I gotta agree with @Stretched here. I think this forum is overrepresented by those who have the more severe forms of ME. The advice they give is great for those who in the same situation, but for those with the milder forms of ME its different...

I agree that the forum is overrepresented by people who have more severe but, being completely selfish for a second, I have found that enormously helpful. I discovered the forum following a relapse when my mild ME was in danger of slipping back into moderate. The fact that that didn't happen is due in part to what I learned from people here.

As someone who has a milder form of ME I can fully confess that reading these forums gave me an unrealistic fear of exercise. I consequently reduced my exercise and my symptoms worsened.

I was intrigued by what you stated here about exercise because I can't identify with it even as someone with mild ME. At the moment, I don't have the ability to do any exercise for longer than five minutes if it's more strenuous than walking. My tendency is to be too active generally and when I realise it and step my overall activity down, I always feel better but never recovered. From your other posts, I can see that you definitely have an abnormal response to exercise but from the little I've been able to glean, it isn't characteristic of ME.

I'm not usually one to question someone else's diagnosis and you know more about your condition than anyone else here. If you haven't read the CCC, I would encourage you to do so. The diagnostic protocol starts on page 11.

I hope you don't take my post amiss. I'd hate to think you could have something else that has gone undiagnosed and which might be treatable. Also, if you don't have ME but you mistakenly believe that you do and you tell other people that doing less exercise has worsened your symptoms, it doesn't do pwME any favours.

Either way, I'm glad you find the forum helpful and I do agree that there are ways in which it can be a double edged sword. You just need to sort out the wheat from the chaff.

 

[anciendaze]

I'd like to add my support to what Scarecrow has said. It is by no means unlikely for someone with a different illness to be diagnosed with "CFS". You might take a look at the list of physical problems Byron Hyde found in a sequence of patients referred to him for "CFS". You might even check his book on missed diagnoses.

I would actually say that finding you have been misdiagnosed would be a positive thing. Many conditions are much more treatable than the core illness causing so much head-scratching.

My own story is that I had relatively mild symptoms for many years, but became unable to do much of anything after an extended period in which I pushed myself to work 12-hour days, and drive 2 hours a day. During this time I consulted several doctors, and not one of them even suggested I was pushing myself into a collapse. They all said exercise would be good for me.

I do not tell people simply to reduce activity. I tell them to "do what you can when you can". This is checked by keeping a journal of what happens each day, and how it affects you in the days afterward. My own pattern has been excessive activity one day, followed by three days of crash. When you find such a pattern, you know to change something in the day just before the crash. I learned about the importance of maintaining hydration and electrolytes this way. I also learned that my time spent upright was important before any doctor mentioned "orthostatic intolerance".

What is excessive for one person may or may not be excessive for another. You may also have different thresholds at different times. When I have been able to exercise I've learned to pace myself according to heart rate. I also learned to pay attention to the time required for heart rate to recover to base line afterward. If that time improves, you are gaining ground. If it gets longer, you are sliding back. It doesn't matter how easy an exercise is for someone else, if your heart behaves like it is working hard, believe it.

It is important to discover what is exacerbating problems. This is very much an individualized illness, and needs individualized treatment, which doctors generally do not provide.

 

[worldbackwards]

Let's not toss all the water out with the baby... .

The ME community can harm babies. It must be stopped.

 

[jimells]

The reason there are so many severe patients on the forum is simple: where else are we going to go? Our lives have been wrecked by neglect, abuse, and poverty, not to mention the illness itself. We're incapable of more than trivial physical activity of any kind. Poking computer keys and hoping there is someone on the other end is about all we got left.

I wouldn't expect mild-to-moderate patients to spend much time here: they still have lives to live.

 

[Scarecrow]

The reason there are so many severe patients on the forum is simple: where else are we going to go? Our lives have been wrecked by neglect, abuse, and poverty, not to mention the illness itself. We're incapable of more than trivial physical activity of any kind. Poking computer keys and hoping there is someone on the other end is about all we got left.

I wouldn't expect mild-to-moderate patients to spend much time here: they still have lives to live.

Just so there's no misunderstanding, when I echoed the comment about overrepresentation, I was very aware of the reasons why and didn't mean it in an off hand way.

I bet you'd be surprised about the number of mildly affected patients lurking around, though. When you've given everything to a full-time job, you don't have a lot of capacity left to live the rest of your life.

 

[Hip]

I wouldn't expect mild-to-moderate patients to spend much time here: they still have lives to live.

Certainly they still have lives to live, but in fact the treatment knowledge on this forum could be extremely helpful for patients with mild ME/CFS: if these treatments can make significant improvements in more severe ME/CFS patients (and we know they often do), then these treatments may be able to more or less eliminate mild ME/CFS.

I imagine there may be millions of mild ME/CFS patients struggling in full time work, many of whom may not even be aware they have mild ME/CFS.

 

[jimells]

In my last post I meant to mention the folks that are too sick to use a computer or even listen to the radio. It's scary to think that no matter how bad I feel now, it can always get worse, and likely will. (I try not to think on that one too much)

 

[Snow Leopard]

Interesting that somebody is complaining about too much biomedical treatment?!?!

Yeah, I want to move to a country where those who push a psychiatric narrative are the small minority.

 

[alex3619]

I bet you'd be surprised about the number of mildly affected patients lurking around, though. When you've given everything to a full-time job, you don't have a lot of capacity left to live the rest of your life.

I have talked to quite a few mild patients, here and elsewhere. I was once one myself. There is work. There is a little bit more. Then there is exhaustion and resting up for the next round of exhaustion. So they want answers too. They might just have a little less time to be here.

I am currently heading toward severe again, and spending less time on PR. So it works the other way around. I have to pace my time on PR. Doh. So I spend time here in bursts, then do something different, then return. Repeat.

 

[alex3619]

In my last post I meant to mention the folks that are too sick to use a computer or even listen to the radio. It's scary to think that no matter how bad I feel now, it can always get worse, and likely will. (I try not to think on that one too much)

There are way too many of these people. I wish more could be done for them. They do not spend any time on these forums, and are the sickest.

Maybe forums send out magical vibes that catch them even if they are not here? [Sarcasm]

Let me give an alternative theory as to a supposed association between forum attendance and severity. At this point I will gloss over the issue that the more severe are doing the most searching.

Many with just chronic fatigue are probably being treated by psychs and psych related treatments. So they are a different group, as chronic fatigue by itself does not often entirely fit on forums. They might not find what they are looking for, and leave.

Its similar for those who have other fatigue related problems. Again, these forums are not a good fit, so they are not here.

Such patients might indeed respond better than patients found here.

So the psychs get a false sense of what is going on.

Finally its worth restating a very important issue: association is not causation. Claiming one and only one theory about causation, based only on association, is sloppy thinking and bad science. Oops, I forgot, nearly all the people claiming this, and maybe even all of them, are not scientists.

PS The psychs claimants very rarely see severe or very severe patients as well. Many probably have no idea what severe really means, and most probably have no idea what very severe really means.

 

[Seanko]

Yeah, I want to move to a country where those who push a psychiatric narrative are the small minority.

Norway has a population of 5 million so all the patients,medical schools & politicians are gathered in a few cities. It means that they can all talk to each other more easily.

 

[worldbackwards]

There are way too many of these people. I wish more could be done for them. They do not spend any time on these forums, and are the sickest.

Maybe forums send out magical vibes that catch them even if they are not here?

I used to be that ill. The possibility that you were exerting mind control over me cannot be excluded. After all, the ME community can harm patients.

The psychs claimants very rarely see severe or very severe patients as well. Many probably have no idea what severe really means, and most probably have no idea what very severe really means.

I remember my GET, a physio who genuinely didn't understand the concept of housebound and bedridden, who simply hadn't seen it before in her vast and comprehensive experience that everyone never stopped going on about. I recall a conversation about a suggested visit to a 50 mile distant Chronic Fatigue centre for ill-defined reasons:

"If I go on that journey it will make me more ill for at least two months."
"Yeah, but you can stop overnight."
"And still be more ill for about two months"
*sucks teeth in*
"I don't think you're really motivated to recover"

She was, apparently, the top expert in the area.
#signsoftheapocalypse

 

[panckage]

It looks like my post was pretty controversial. It wasn't meant to be haha
@SOC @Bob @Scarecrow @Snowdrop
I do probably get PEM from exercise but crashes are pretty random. I have all the symptoms noted in CCC. I must take medications in order to do exercise. This is getting pretty OT though. I have answered many questions asked in this thread: http://forums.phoenixrising.me/inde...e-find-exertion-not-related-to-crashes.38509/

If there are any unanswered questions I would be happy to address them there

 

[Aurator]

I do probably get PEM from exercise but crashes are pretty random.

Are you saying the PEM is random or just the crashes? And if it's just the crashes, what brings on your PEM?
In your other thread you say you are "usually...just the same as before the exercise" and talk of being able to exercise your way out of a crash. This is most unusual for people with ME/CFS. If you can exercise your way out of a crash it sounds as though you could quite possibly exercise yourself well again. Why have you never given it a go? If I could exercise my way out of a crash, I would be ecstatic.

 

[Hutan]

@panckage , I agree with others that your symptoms sound more like pure OI than ME/CFS+OI. Have you seen a doctor to check out OI and so perhaps get specific treatment for that, and to check for other possible diagnoses? If you don't experience consistent ill effects from exercise then, as others have noted, a careful program of exercise may be helpful. Whatever works.

I have found the online ME community tremendously helpful. Nevertheless, it helps even more to have support from people who are actually physically there with you. From your posts, I get the sense that your emotions are swinging around a bit, which is perfectly understandable, but also that you don't have support. Is there someone wise that you can seek out to talk to?

You seem to be still quite functional. Given that, I wonder if the self-medication with marijuana and opioids, kratom and others may be making your situation worse rather than better.

Best wishes