Well said. It's also worth noting that psycho-social treatments have been studied extensively (e.g. PACE trial) with poor results.
While I'm happy for people here who have resolved whatever underlying psychological and/or emotional issues that were causing them problematic fatigue, the experience of many CFS/ME patients suffering post-exertional malaise is generally much more specific in the type of fatigue suffered, and much broader in the range of symptoms experienced.
One example of cutting edge CFS/ME treatment research focuses on the use of rituximab, which has been pioneered by Norwegian oncologists who discovered its effectiveness accidentally, and are now pursuing a phase three trial after successful smaller trials. There are a variety of other approaches being explored too (e.g. Pridgen & anti-virals with anti-inflammatories, Montoya at Stanford, and so on).
A serious disease needs serious research, and serious research requires serious funding. Psycho-social theories do a disservice to those suffering from a very real, very debilitating illness, and the sooner these distractions can be dispensed with, the better.
I found the reference. I assume you're referring to the primary end-point of their initial study which was "effect on self-reported CFS symptoms three months after intervention"? As has been widely discussed, the effects showed up 6-10+ months after initial intervention (which was a very intriguing finding), and were often not sustained. They've since modified their protocol to include maintenance doses, so the results of their phase three trial will be very interesting, when it's finally complete.
Well, "real" insofar as it's shorthand for "not emotion-based". I.e. it can be observed, studied, and treated in an appropriate scientific manner, and not by means of self-help emotional woo.
Do you have a source for your comment about the end-point being negative? The last interview I read with the researchers suggested they were still getting results in 2/3rds of patients, they were optimising their dosing schedule, and were fairly upbeat about their prospects for their phase three trial. I'd be interested to read more discussion on their work though.
It would absolutely be possible to observe/study/treat in an appropriate scientific manner, treatments that focus on emotions.
To dismiss any emotion-based causes/treatments as "woo" is to claim that there is no link between emotional activity and physiological functioning.
There's every bit of difference between saying to a CFS patient "it's all in your mind, go and get a haircut to make you feel better", and saying "your emotions - particularly your subconscious ones - play a huge role in your physiology, you can improve your health by improving your emotions using this technique for which there is a solid track record of success."
Psycho-social theories do a disservice to those suffering from a very real, very debilitating illness, and the sooner these distractions can be dispensed with, the better.
No, it's the refusal to consider such theories and include them in proper research that does the disservice to sufferers. For as long as this continues to be the case, a genuinely effective treatment for CFS will not be found.
I should emphasise: I don't argue for a psychology-only approach to treatment, far from it. My improvement is as much a result of physiological treatments as emotion-based ones. My argument is that both are important, and one without the other will not work.
> No, it's the refusal to consider such theories and include them in proper research that does the disservice to sufferers. For as long as this continues to be the case, a genuinely effective treatment for CFS will not be found.
But they have been considered. And studied. And found wanting. It is not, anecdotes notwithstanding, possible to "improve your health by improving your emotions using this technique for which there is a solid track record of success". There _isn't_ a "solid track record of success. That's the whole point. If there was, we wouldn't be having this conversation, because everyone with CFS would be cured several times over by now.
That's why there is a need for real (read: effective) treatment. If I, or any other of the many sufferers out there, could heal ourselves through some emotional technique then we would be _over the moon_. But we (and many others) have read the books; tried the techniques; and are right where we started: wanting real funding for real research for a real disease.
Physiological treatment will work alone, just like they have for stomach ulcers, and countless other illnesses that were previously attributed to vague, non-scientific explanations. We just need to do the research.
It's a similar situation with depression -- there are treatments available (such as CBT), but they aren't effective for everyone.
I think the problem with CBT for CFS is that it has an incorrect etiology, and more effective psychological treatments will likely become available.
From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it, so they essentially end up doing the exact opposite of what is required to recover, resulting in further illness rather than recovery.
> From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it, so they essentially end up doing the exact opposite of what is required to recover, resulting in further illness rather than recovery.
How much of this is due to your personal experience vs survey of the data? "Cure" is a very powerful word. There are several examples of CBT providing beneficial results, but nowhere near complete cures as far as I know. It's important to separate our personal experience from the data about a disease with possibly heterogeneous patient population.
For the record, I have no doubt psychological state has an effect on ME/CFS symptom severity.
My comment was based on research into the illness, and understanding the underlying etiology (see my peerj post). Also, I have seen many people cured completely from CFS (most of whom didn't use CBT).
Unfortunately there is no effective, evidence-based treatment that is based on a sound etiology of the illness. However if you understand the etiology you can certainly "hack" your brain to fully recover from CFS like myself and many other patients have done.
>>From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it
Sorry but this is dangerous and insulting to a lot of CFS patients. I wonder how far down you were as I've seen several examples of people driven to near suicide if they had the energy. These are people who are desperate beyond comprehension and will literally believe anything put in front of them.
You may have been able to hack yourself better but you are going down the route of victim blaming here suggesting "if only you believe it will work".
CFS seems to have a lucky group who recover and then become almost evangelical about their approach, thinking it will work for everyone. Often this treads dangerously close to pseudoscience and how they know more than doctors.
9 times out of 10 a book or audio course is not far behind.
You're making sweeping generalisations about a broad patient population that ends in victim-blaming, which isn't helpful.
If there is a subset of chronic fatigue patients that are helped by your method, great. But you don't seem to accept that some CFS/ME patients have tried and have not responded to those sorts of techniques. They did believe it. It didn't work. They need proper medical treatment, in the same way (say) MS patients do, not blame for "simply not wanting to believe it".
Please try and accept that there's more nuance to the situation, rather than painting everyone with the same brush.
I'm not blaming anyone, I'm simply pointing out that some patients would not be "over the moon" if an effective psychological treatment was shown to them. You can see this in any forum, where there is hostility towards any type of treatment like this. Even many doctors and researchers have hostility towards this kind of research.
Also, I'm not really sure if patients have "tried and not responded" to these techniques. (If you're talking about CBT, relaxation or positive thinking, that is not what I'm talking about). I think you're perhaps assuming that because CBT isn't very effective that no psychological treatment is effective. That's like saying that because one drug doesn't cure a disease then no drugs will work.
>However, recovery is possible in all cases, even for the most severely disabled patients, and in many cases this can be achieved by a relatively simple change in lifestyle
You appear to have reached that conclusion by extrapolating from positive, lifestyle magazine style reports of CFS recovery based on a range of dubious treatments (which you put down to the placebo effect) -- along with your own experience.
Can I suggest that's not a great source of evidence?
If I understand you correctly, you believe HPA-axis dysfunction causes the symptoms of CFS, which is prolonged by "factors such as mental attitude and negative feedback". Change your mental attitude and you stop the negative feedback loop, allowing recovery to occur.
This theory appears to me to be:
- Based on many unproven assumptions and leaps of logic around HPA-axis involvement.
- Based on inherently biased recovery reports that could be due to spontaneous recovery (which you mention) as much as anything.
- Results in an unfalsifiable theory that blames patients for their continued suffering (people can recover if they change their attitude/lifestyle; if they don't, they mustn't have changed their attitude/lifestyle).
This is not scientific. Theories around HPA-axis involvement are a dime a dozen. Theories around changing your lifestyle/attitude resulting in a "cure" are simplistic and patronising to the many, many sufferers who have done just that, and not seen the cure you say is possible for all patients.
CFS patients get sick of this sort of thing because it seems to be the proponents of psycho-social approaches with faulty beliefs and poor logic -- not the patients -- that leads to unfalsifiable, unscientific theories being promoted to very sick, very vulnerable people, who you say could be cured, if only they stopped with their gosh darn negative attitudes and poor lifestyle choices!
You need better evidence than anecdotes from mass media and a hand-wavvy physiological/psychological explanation to make such grandiose claims.
Please consider re-evaluating your own beliefs in light of the much broader evidence. For example, a positive attitude and lifestyle change are the driving forces for many CFS patients that leads them on decade+ journeys attempting to right the ship, only to find improvement fleeting at best.
While some people may spontaneously recover along the way, confusing correlation for causation, and painting a minority of psychological cases as reflective of the whole is unhelpful and, honestly, could do with a large serving of humility and more research about those that haven't recovered before you make grand claims about "recovery in all cases" based on mental attitudes and lifestyle changes.
Again, what patients need is real research from the scientific and medical establishments, not hand-savvy, victim-blaming theories from armchair internet experts.
Actually, the main basis of my theory is research into how chronic stress affects the HPA axis, and how treatments appear to reverse this dysfunction in CFS patients.
The "hand-wavy" stuff you refer to is really just to try to explain things better to patients, however the actual theory itself (https://peerj.com/preprints/860/) should be solid. However, now that you point it out, I can see there are some sections of the website which I'll need to take a look at again.
Actually, rather than blaming victims, I'm actually saying that most patients don't really have good information about the etiology of the illness, which is what I'm attempting to address. (There is some anti-psychiatric bias as well, but that is present in the general population as well). Anyway, if you have any constructive comments I'd love to hear them (email is probably easier). Otherwise there's probably no point discussing any further.
A few final comments from me to clarify my position and seek to find common ground...
1) We're on the same side here. I've been through the same exasperating journey as you, being infuriated at suggestions from doctors and armchair experts that I just needed to pull myself together and adopt a more positive attitude to life. I get it, it's horrible and patronising to be told that, and I totally understand you having the reactions your having in this thread.
2) You've inferred from the fact that some people recover from CFS via emotion-based treatments, that they weren't really very sick. This certainly hasn't been the case for me. My illness was very severe and debilitating, and is still not completely healed. My recovery has not been spontaneous or imagined (according to observations from those close to me), but has happened steadily over the 2-3 years I've been doing this very specific (but little-known) subconscious-emotion-based treatment, along with a sensible (not obsessive) diet, a small number of supplements, and gentle exercise. Sure, I would love it if there were just some pill I could take that would rapidly cure me, but as you point out, it doesn't exist, so I'm going with whatever I can find that helps, and what I'm doing now is remarkably effective.
3) But we (and many others) have read the books; tried the techniques; and are right where we started
I get it. I've done the same thing. Nothing worked. Until I discovered NET, then adapted it to be more effective for my own condition. I don't think it's the be-all-and-end-all, by any means. But I know it's promising, and it warrants research - yes, research that conforms to the scientific method - just as much as any pharmaceutical approach.
4) wanting real funding for real research for a real disease
It's not as if there hasn't already been a lot of research put into CFS over a long time. Could there be more? Sure. Would even an unlimited amount of pharmaceutical-focused research yield results? I strongly believe it wouldn't.
5) Physiological treatment will work alone, just like they have for stomach ulcers, and countless other illnesses that were previously attributed to vague, non-scientific explanations.
There's no reason to believe this is true. All the evidence I can see indicates that it fits more into the category of MS, MND, Alzheimer's, autism spectrum disorders and all the other illnesses (including many cancers) that have been extensively researched for years and show no signs of being any closer to being solved.
6) If I, or any other of the many sufferers out there, could heal ourselves through some emotional technique then we would be _over the moon_
If you're serious about this, you should get in touch. I don't expect you to blindly accept any of my claims and undertake the same treatment program as me. But I'm quite serious about getting some proper research done into the treatments that have been effective for me and others I know.
So if you'd like to know more, or contribute in some way, even as a well-meaning naysayer, feel free to drop me a line - tom.howard/gmail.
Mental illness is a set of real debilitating illness where "emotional woo" is often used.
But, if you want something more real, how about cancer pain? Many people experiencing cancer pain experience relief from that pain with the help of the treatment you ignorantly dismiss as "self help emotional woo".
> I think the situation is more akin to stomach ulcers, which everyone _knew_ were caused by stress, until of course a physiological cause was found.
Everyone knew that there were multiple contributing risk factors, including physiological, behavioral, and stress-related, for gastric ulcers before H. Pylori's contribution was discovered. And all those other factors are still relevant after H. Pylori, too, its just one added factor that wasn't known previously.
Your line of thinking is interesting. If you actually look at the research, you'll see that stress is still a factor in gastric ulcers (see for example http://www.ncbi.nlm.nih.gov/pubmed/25111233 and http://www.ncbi.nlm.nih.gov/pubmed/16581366). Just because H.Pylori can cause ulcers doesn't mean there can't be other causes. Given that psychological stress increases stomach acid, it's plausible that stress can cause ulcers.
A lot of CFS patients bring up the subject of stomach ulcers. It's almost as if they want to prove that psychosomatic illness doesn't exist.
While I'm happy for people here who have resolved whatever underlying psychological and/or emotional issues that were causing them problematic fatigue, the experience of many CFS/ME patients suffering post-exertional malaise is generally much more specific in the type of fatigue suffered, and much broader in the range of symptoms experienced.
One example of cutting edge CFS/ME treatment research focuses on the use of rituximab, which has been pioneered by Norwegian oncologists who discovered its effectiveness accidentally, and are now pursuing a phase three trial after successful smaller trials. There are a variety of other approaches being explored too (e.g. Pridgen & anti-virals with anti-inflammatories, Montoya at Stanford, and so on).
The work on rituximab, and other research (e.g. this POTS research on autoimmunity: http://www.dysautonomiainternational.org/blog/wordpress/new-...) suggests autoimmunity, but much more research needs to be done.
A serious disease needs serious research, and serious research requires serious funding. Psycho-social theories do a disservice to those suffering from a very real, very debilitating illness, and the sooner these distractions can be dispensed with, the better.