So called placebo effect or something more insidious?

[RustyJ]

It is a puzzling, yet quite common occurrence for CFS patients to experience brief periods of recovery when taking on new treatments. This is often accepted as a placebo effect by medical carers.

I also have experienced brief episodes of recovery that have coincided with a new treatment, which I can't accept as being simply a placebo effect.

If this has been discussed before please let me know, but if we exclude the placebo effect, what other possibilities are there.

It is possible for the recovery period to be coincidental to the application of a treatment.

Another possibility is that there is some self adjusting mechanism operating that resets our systems back to the poor level prior to taking the treatment.

What sort of body system could do this? Could it be bacterial populations in our digestive system which do the resetting? Millions of mutant, self aware bugs plotting our downfall?

I am considering this possibility because I am about to embark on a B12 methylation protocol and after reading some of the posts about faecal testing I have also decided to massively dose myself with probiotics.

And let me say, I have not abandoned XMRV, I am just sick and tired of waiting around for something to happen.

Any thoughts?

 

[heapsreal]

i think or body keeps adjusting to what we throw at it, i have found revisiting old treatments working once again, if only for a short while. I dont think its placebo, i think many things work but we have to keep mixing it up regularly. Basically our homostasis is buggered and working against us all the time, i think this is where we get alot of frustration from. Plus we have so many systems out of whack like immune system, circadian rythm, hormones, viruses reactivating etc etc. we plug one hole then we bust a leak somewhere else and we only have 2 hands. Theres no one hit wonder its going to take a multi strike treatment that we can vary when we need to.

cheers!!!

 

[ukxmrv]

Rusty, I've had so few good reactions to drugs, supplements, dietary changes and I don't think that I am unusual or resistant to placebos....

There is a never ending list of new protocols or things to try. Been doing them for over 25 years now.

I think that it is important for people to get an idea of what their baseline is and find a good tool for assessing if there is a real improvement. Also to have kept a diary or some other way of determining if there are seasonal or monthly changes. I get so disappointed when someone posts an improvement on-line and doesn't use a measure and doesn't tell us what is normal for them.

I've lost track of the people who claimed to have recovered or made a substantial improvement who disappear from groups and then reappeared later just as sick as before. I've seen some people go from group to group on line. Just wish that I could get more even short lived improvements.

Do you get these brief "recovery" periods when you are not trying things?

 

[RustyJ]

Hi ukxmrv. I am not really talking about recovery, just improvements. In fact I have been quite dubious about so called recoveries because inevitably those people are not back to full health.

Eg years ago I improved say 20% on an antibiotic for a couple of months (for the life of me cant remember what it was). I was able to run every afternoon without PEM. But have tried many antibiotics since then without the slightest effect. I have heard people talk about this sort of thing happening.

In that instance could it be that a concurrent infection was cleared up, but the vacuum was taken up by other infections? Rather like clearing out a nest of criminals, only to have others move into the vacuum.

I also experienced a 6 month improvement on Cutler's ALA protocol (again 20%), but could not replicate this later. Similarly on Vit D supplementation I initially get improvement and then gradually the impact wears off. With D, I can replicate the effect, but only for a couple of months - 15,000IU/day. In these instances part of the chain of chemical cascades is affected for a short time, but something rebalances and I am right back where I started. These are also the experiences of other patients.

Why or how is the system resetting?

I might also add that there are many things I have tried, without benefit, which is why I discount a placebo effect.

I am not looking for full recovery, by the way. Deep down I believe XMRV treatment will be the critical factor, but even then system repair may be needed for full recovery.

Looking at the poll for the B12 protocols on this board, more than 50% get some benefit, which is not a bad proportion. Those figures might be higher if people didn't pull out because of tolerance issues. I also wonder if B12 protocols or any other supplement/protocol which seek to short circuit a misfiring cascading chemical process are hamstrung by intestinal issues, sort of like throwing seed onto barren ground.

I guess a lot of the protocols advocate probiotics, but perhaps not as strongly as they should. Some of the faecal testing is showing a virtual wasteland type scenario, and I fail to see how the application of a single strain of bacteria (often recommended) is going to correct intestional populations.

Also, I have not had any significant improvement that could not be attributed to treatment.

 

[RustyJ]

Plus we have so many systems out of whack like immune system, circadian rythm, hormones, viruses reactivating etc etc. we plug one hole then we bust a leak somewhere else and we only have 2 hands.

Hi Heapreal. While this is one logical possibility, and obviously in some cases most probable, what I am talking about is not other leaks appearlng elsewhere, but the same leaks appearing. Also many of the system breakdowns are simply cascades. Eg there is a very strong link between glutathione depletion and food intolerances and Vit B and Vit D deficiencies and circadian rhythm disturbances which suggests probably only a few cascading systems are involved. Eg when Vit D is effective, all my symptoms are somewhat improved.

One argument is that our neurological dysfunction can be sourced to the stomach where paradoxical folic acid absorption may explain almost every single reported symptom, including PEM and OI.

 

[Mark]

See Broderick et al from the NIH Workshop, and "Bad Wiring" - discussed in depth in Cort's articles on the home page.

Broderick's slides depicting the network in ME/CFS as distinct from the network in GWI was worth a thousand words for me. It showed a network which has lost its integrity. Restoring a more powerful and coherent homeostasis rather than the state into which we tend to settle back, would seem like an impossibility, and only a few years ago that would have been taken for granted I think.

But read also Broderick's Pandora interview: after tracking down these patterns as a biomarker he hopes next to use similar computational biology techniques to explore ways to restore the network to health, and is optimistic for the possibilities there. Coming from a methematical and computing background, I concur. And in other fields, the conventional wisdom that all this wiring can only be constructed in childhood is being overturned - neuroplasticity in later life is far greater than previously assumed, and can be enhanced and encouraged.

It just goes to show that there really is always hope even in the darkest of places. Again makes me think of the title of one of my favourite songs, a song which also reminds me how privileged I am to know you all...
http://www.youtube.com/watch?v=INgXzChwipY

 

[heapsreal]

Hi Heapreal. While this is one logical possibility, and obviously in some cases most probable, what I am talking about is not other leaks appearlng elsewhere, but the same leaks appearing. Also many of the system breakdowns are simply cascades. Eg there is a very strong link between glutathione depletion and food intolerances and Vit B and Vit D deficiencies and circadian rhythm disturbances which suggests probably only a few cascading systems are involved. Eg when Vit D is effective, all my symptoms are somewhat improved.

One argument is that our neurological dysfunction can be sourced to the stomach where paradoxical folic acid absorption may explain almost every single reported symptom, including PEM and OI.

also if the brain/hypothalamus is injured in cfs/me then this can effect our whole system especially our HPA axis which sends out most of the signals needed for bodily function and agree theres a cascade effect going on, might be why the longer u have cfs the harder it is to recover???

 

[illsince1977]

As someone who has also had many experiences of something "helping" some (sometimes spectacularly!) for a while, then "failing" and never helping again, I hope Broderick is right, though I tend to be skeptical that it is correctable. But surely understanding the physiology must precede correcting it, so it is wonderful to see new paradigms emerge.

The question, for me, always seems to come back to how did this haywire, eerily similar, pathological homeostasis occur in the first place in so many previously healthy, athletic people? Surely a resilient pathogen must be at the root of being able to overwhelm/adapt to new challenges we throw at it again and again (antibiotics, probiotics, vitamins, hormones, herbs, antivirals, herbs, what have you!), in which case one must find the pathogen that's causing the disturbances rather than simply describe those disturbances.

Please don't get me wrong, I haven't "given up" yet, and I don't encourage anyone else to "give up", I'm just no longer very optimistic that the next thing I try will hold any "key" for me, and even if it does I realize it will probably be very transient. Like Ukxmrv, it gets hard to even trust other people's claims, if only because misunderstanding/miscommunication is easy, especially when we want so much to have found our answer/s. But I think we really do often experience improvements, and they are not attributable to placebo.

 

[Snow Leopard]

I see it to do with wishful thinking and false attributions of small improvements to the treatment than any kind of biological placebo effect.
This is more or less the same reason why you see reported improvements on questionnaires after cognitive behavioral therapy, yet such 'improvements' regress back to their old levels in the long term.

 

[taniaaust1]

I tend to either get no results at all (which is what usually happens to me) or on rare occassions do find something which helps and will usually keep getting that help from the med/supplement till I find that I no longer need it for the improvement. With the things I tend to find which help me a little, I usually end up taking them for 2-3 years after which I find my system seems to have reset itself healthier and I dont relapse back into whatever its helping on stopping.
eg after talking B12 injections twice a week for 2-3 years.. I arent on them any more and havent lapsed back into the bad brain state I was in before I started taking them.

Eg years ago I improved say 20% on an antibiotic for a couple of months (for the life of me cant remember what it was). I was able to run every afternoon without PEM. But have tried many antibiotics since then without the slightest effect. I have heard people talk about this sort of thing happening.

I noticed that some people get improvements with things and hence then will start doing more and end up loosing their improvement from their supplement (subtlely crashing a bit due to doing more) due to that. When one crashes even if it is a subtle crash.. you may of actually worsened your original state, they went one step forward but sent themselves two steps back so hence now what was working isnt working now (may need more of something or more done to get the same improvement they had before).

You may want to consider if you are doing this kind of thing... rather then being careful with improved health are you trying to use this more and sending you back the other way into suddenly you finding the supplment isnt working anymore.
...........

Ive also noticed that some people so want something to be helping that they end up convincing themselves it is, (we all really want to find something which works!). It can take several months or so for reality to hit if one has convinced oneself to realise that ..no its not working. Some people may be more hopeful then others and hold onto the normal going better at times of CFS/ME, thinking they are improvements. Being such an up and down illness.. it can make it very difficult to know if one is just going throu a temporary better patch.

 

[ukxmrv]

I just remembered that when I have tried as few things that did help for a while (and this is not a cure or remission) then nail growth always accompanied them. I started to get the long, strong beautiful nails that I had before ME.

 

[Freddd]

I spend decades going down hill and almost 17 years in total crash. I made my way around many practitioners and many therapies. Each and every one of therm was confident that they and their favored therapy would be able to help me. Where I was different was that I tracked everything in a diary and wrote a program after some years to extract the data in a form I could put into a spreadsheet and plot on a graph. Now that was instructive. What I found was how much variation I typically had from day to day. I found a 2 week cycle and a 4 week cycle and later some 24 hour cycles, a 10 day cycle and so on. Over time I was able to pin down the causes of all the cycles except the 4 week cycle, which as far as I know, is still going on. I haven't done that kind of record keeping in a while now.

So when I had treatment of whatever variety I then could compare the range and variations of that period, on any number of measures, and see if there was any improvement or worsening or nothing at all as compared to other periods and/or treatments. What I found was that most of the apparent periods of short minor improvement after a treatment was just an illusion of timing. Mostly there were no variations at all in the normal fluctuations. I found that in the 4 week cycle as things got worse that I was more inclined to be willing to try something new and that the new therapies tended to be started in the last 2-3 days of the 4 week cycle when everything was at it's peak worst period that then fed into the beginning of the next cycle at the lowest point in the curve. I never would have seen this without plotting it. What I did find was that my chiropractor helped with my back and neck problems and that only a very few of the drugs prescribed ever did much to alleviate a few symptoms out of a couple of hundred. Nothing ever worked at actually curing anything until the mb12. That was so blatant that I didn't need a spreadsheet and graph to see the results. As various drugs and treatments may change the balance and biochemistry until the body goes back to equilibrium they may also give the illusion of helping.

Statistics can be useful to see subtle things but they can also obscure some things. Patterns can be useful to in detection of things too subtle to see by statistics. They helped me see the causes of some cycles, the existence of the cycles themselves, the accident of timing and pseudo placebo effect.