Cook, Light, Light, Broderick et al: Neural Consequences of Post-Exertion Malaise in ME/CFS

[Mohawk1995]

What many people coming out of this will need is practical assistance.
Any other help ought to be available as it would for any other illness but strictly at the discretion of the person who's life it is.

Agreed 1000%!

 

[CFS_for_19_years]

Not at all. If we were discussing this in person and not on a forum, you would know that is not my intent. My point was to emphasize if someone worked hard to recover then their work to get there should be acknowledged and respected.

Exercise and "hard work" does not lead to recovery. I've got exercise logs and laminated swim workouts (lamination keeps the workout plan dry) to prove it. I used to be an elite swimmer and no matter how many laps I did in the pool (as a sick person) or how many miles I walked (30 mins twice a day) I was just as ill as before. I was able to do this for at least 10 years, but I was just as sick as before I exercised.

Pacing and NOT pushing myself has had a much better impact on me now.

 

[Mary]

It's not like we do less that we can. This literally never happens. The problem with ME patients is pushing ourselves, or being pushed by others, to do more than we can handle.

It's like this needs to be said on some kind of feedback loop.

Absolutely! I've never been harmed by "doing too little", whatever that might be, but have been harmed countless times by trying to do too much - the too much being things like doing the dishes or buying groceries, etc., you know, things needed to stay alive in reasonably sanitary conditions ..... everyone here is struggling to do what they need to just to survive without harming themselves, sometimes an impossible task - no one here is happy being confined as in a straitjacket, forcing themselves not to live. I think we keep getting compared by some to healthy people who are happy being couch potatoes ...

 

[Mary]

Not doing enough physically with regard to ME/CFS is a non sequitur. It doesn't exist.

When a cure is found, yes, of course, many if not most of us will be deconditioned but that will be an extremely minor matter!! If we can survive ME/CS, we can survive and will gladly welcome any conditioning required to render us non-deconditioned

 

[Mohawk1995]

Believe it or not when it comes to living with the disease and primary treatment of ME, I am in complete agreement with everyone including @Valentijn. Where we may differ is that "treatment" (whether other or self administered) is not complete in my thinking until the highest level of function possible has been achieved. We also may differ on the thought that things will naturally or spontaneously return to normal once primary treatment is completed. For some, maybe even many that could be the case. I do not think what we know of patho-physiology would support that it will for all and especially not for severe cases.

On the other matter, yes it should always be a personal choice to pursue treatment, to not pursue treatment or to discontinue treatment at any given time. These choices are not optional for my practice of PT. If I was mandated to force patients to complete inappropriate therapy, I would quit the profession or move to another country that does support personal choice. The biggest sin if you will, was that clinicians continued to force patients to complete treatment when all indications where that the treatment should have been stopped. This, even more than the treatment in and of itself caused the greatest damage. Lastly I agree that working harder right now to the person suffering with ME will only worsen matters as everyone is saying.

@CFS_for_19_years Please pardon my American expression. When I said "worked hard", I meant after primary treatment was effective and did not mean physical work alone. Primarily meant the effort it would take to get back to the highest level of function possible. It will likely take years. Of the two people I know who had the disease for over 3 years, it took both of them 3 years to get there.

 

[CFS_for_19_years]

@CFS_for_19_years Please pardon my American expression. When I said "worked hard", I meant after primary treatment was effective and did not mean physical work alone. Primarily meant the effort it would take to get back to the highest level of function possible. It will likely take years. Of the two people I know who had the disease for over 3 years, it took both of them 3 years to get there.

Which "effective" primary treatment are you talking about?

 

[Mohawk1995]

Which "effective" primary treatment are you talking about?

As I am sure you are aware, there is currently no recognized effective primary treatment. As you are a long term member I am also sure you know of the reports that certain Antiviral protocols have seen spotty success and Rituximab has shown some preliminary promise in Norway. The research done in places like Stanford is giving us a better understanding of how ME manifests itself in the body and that will be critical to finding an effective primary treatment. As it is with most systemic chronic diseases, it will likely be a mixed bag of interventions delivered in a specific manner that will require individualized application by an interdisciplinary team.

 

[ukxmrv]

@ukxmrv No disrespect at all intended, I just know that of the list I provided was intended to respond to a specific question and to show how serious I see ME as a disease is. From my experience the body seems to create loops physiologically that often do not go away on their own or in any short order once the initial presenting issue has been addressed. at is not my intent. I am merely applying what I have learned through years of studying research of many kinds of physiologic dysfunctions, years of experience working very closely with people who are suffering from these disorders and my own personal experience including our son's battle with ME.

@Mohawk1995

Thank you so much for the kind reply.

In your experience have their been any other diseases (with sufferers going back decades) where suddenly a cure has been found and the primary disease process cured?

I know that this is probably a very silly question but I am hoping yourself and others will know anything that could prepare us for any problems when a cure for ME is found?

I'm wondering what patients with a similar story you have treated and observed these medium term problems regaining their health?

 

[Mohawk1995]

@ukxmrv The question you ask is a very good (definitely not silly) one for me and the rest of the medical community to ponder. The most notable examples come from those who suffered with Complex Regional Pain Syndrome. Another systemic and devastating disease. Think of the worst pain you could experience and multiply it by 2. The case I remember specifically was a 15 year old girl at the time. She was treated with an experimental program that was found to be effective in shutting off the pain after 3 years of seeking a cure. It took her another 3 years to return to full function. She was able to do most of this on her own, but did require assistance from the medical and counseling community to get there.

I could reference improvements made in the treatment of Rheumatoid Arthritis and that patients with RA are functioning at higher levels today than years ago, but reversing the damage done by RA to an individual is another matter. I have seen patients with Parkinson's Disease make huge strides in their functional level from treatments provided, but they still have the disease. I could talk about the improvements we have made in the treatment of Cardiovascular disease and Stroke, but these disease states are much easier to define than is a systemic yet cellular/molecular disorder like ME. Perhaps the reason why I am so persistent (to the annoyance of some) on functional recovery for ME patients is that I have yet to see a devastating disease like ME in which we have found an effective primary treatment for, that did not leave residual issues in its wake that needed to be addressed to get that person fully functional.

So preparing for that day is not a waist of time in my thinking. When we are able to "shut off" or deactivate the ME process, there will be residual issues in my opinion. Many of which can be overcome by resuming "normal activity". Others, especially in those with long standing ME and/or severe ME will have significant issues that need assistance in addressing. Our son was able to stay relatively active, was young, had good overall health and had no medical or psychological issues prior to suffering with ME. His primary treatment was successful which at the time we did not know was so unusual From there he required guidance from my wife who is an OT and myself a PT to make steady improvements physically, he required physician guidance to address residual immune and digestive issues and he required emotional/psychological support to work his way through both residual cognitive deficits and emotional issues that just 5 years of this disease created. None of these were because he had a weak will, did not try hard enough or had some significant mental health issue. In fact he is one of the most strong willed people I have ever met and he needed every ounce of it through his process. Today he is a remarkable young man although I may be biased!

 

[Valentijn]

As it is with most systemic chronic diseases, it will likely be a mixed bag of interventions delivered in a specific manner that will require individualized application by an interdisciplinary team.

Really? For diabetics, we see a GP or endocrinologist. I go to one person to get a drug prescribed and manage my diabetes. No team needed. In fact, I'm pretty sure most people see one specialist to manage their disease, at most. No one's being sent to get some physiotherapy or psychotherapy unless there's an explicit need for that individual.

There's no rational treatment for ME which would involve physiotherapy, and the lucky few who recover spontaneously have never demonstrated a need for, or benefit from, physiotherapy thus far. Accordingly, I very much doubt ME patients will ever need clinical physiotherapists in a routine capacity. And it's still pointless to speculate about who will be needed to deliver any treatment when we don't even know the cause of the disease yet.

 

[Mohawk1995]

@Valentijn I routinely see people with diabetes for issues related to peripheral neuropathy, neuropathic pain, amputations, skin care, recovering from diabetic ketoacidosis and I also see these patients for other issues while working with them to monitor their diabetes. These are not all people who forego managing their disease and the more difficult to it is to control, the more likely they are to have these secondary effects. I am afraid your view of the diabetic and the at large population is not accurate.

In addition, your view of Physical Therapy and what we help people with every day appears to be very myopic. I am not being patronizing when I say I am sorry that you have had such a negative experience. It may be completely true that for you Physical Therapy would not be needed. In fact that would be the ideal situation. But I am afraid that you are shooting bullets at the wrong people. You are lumping all of the Physical Therapists in the world into your own experience which is understandably biased. In a global sense (and of course I am biased I admit it) you will find few people more empathetic and willing to do everything they can to help others (perhaps Occupational Therapists are a bit more empathetic). You will also find (in the US at least) few professionals who practice true Evidence Based Medication more than do the PTs here. I have on many occasion called us out as a profession and said we need to do better. I have even advocated many times that we back out of intervening because it is not helpful. It sounds to me that what you experienced was none of that which is shameful.

Most improvements in medicine have been incremental. So if we waited until we completely know the cause of the disease before we consider what can be done, we would not be doing much good for many people who suffer. We don't know what causes Cancer, Parkinson's, Migraines, Post Concussive Syndrome, MS, Seizure disorders, any autoimmune disorder or even Diabetes. We can explain the physiological mechanism in many cases. We can find markers to test for and identify. We can even find treatment forms that "cure", improve or at least manage the disease. The root cause is another issue.

 

[CFS_for_19_years]

Perhaps the reason why I am so persistent (to the annoyance of some) on functional recovery for ME patients is that I have yet to see a devastating disease like ME in which we have found an effective primary treatment for, that did not leave residual issues in its wake that needed to be addressed to get that person fully functional.

Perhaps you need to read about some of the spontaneous brief remissions that some members here have had. I had one such remission that lasted about three days. It was as if someone had flipped a switch and I'd never had ME/CFS. I didn't have one symptom period. I was able to walk to the neighborhood pool and swim a mile just like I did when I was well. I had no PEM. I had no "residual issues."

If you do a search for the terms "remission" or "spontaneous" here you will find others with similar experiences. No one has any explanation for why these remissions occurred or why they disappeared. Usually they were for a period of several hours to several days. In my case, I had mine right after an acupuncture session. Everyone who had a remission said the same thing - it was like ME/CFS never happened - no weakness, no pain, no fatigue, no flu-like feeling, no cognitive problems, no PEM, etc. All my muscles felt exactly the same as they did prior to becoming sick.

Whatever theories you may have, you have no practical experience other than what you've observed in your son. For that matter and comparison, I did improve in the earlier years of my illness with no intervention. Perhaps your son's improvement would have happened anyway, just due to the natural course of the illness. The first years are usually the worse and improvements occur naturally after that.

 

[Valentijn]

I am afraid your view of the diabetic and the at large population is not accurate.

As someone who has diabetes, I've got a pretty good idea of what it entails. And the vast majority of diabetics never have any need to see a physiotherapist, especially if they have good management from their doctor. And in any event, there are still no known complications of ME which would benefit from physiotherapy. If there were, it would already be very apparent.

You are lumping all of the Physical Therapists in the world into your own experience which is understandably biased.

Not all of them. Just the ones who persist in insisting on their involvement with the patients that they fixate upon.

 

[Mohawk1995]

@CFS_for_19_years I (I am sure everyone) would be all for immediate spontaneous and long lasting remission without any residual effects. If that indeed is the case for every person with ME, then yes obviously no need for any other interventions and I would not advocate for therapy. But just as I am not naive enough to think my son could not relapse, I am not naive enough to say that everyone who receives effective treatment will be able to progress through recovery without assistance. That assistance might include PT, but not necessarily. Although the stories of spontaneous remission and my son are anecdotal, it does not at the same time discount them as both true and potentially useful in discovering solutions.

 

[CFS_for_19_years]

I am not naive enough to say that everyone who receives effective treatment will be able to progress through recovery without assistance. That assistance might include PT, but not necessarily

You don't know. You're hypothesizing. You're making shit up. I have spent a lot more time on this forum than you and have read about spontaneous remissions. Not a single one of them complained about residual effects.

Here's another example of spontaneous remission with no residual effects:
http://forums.phoenixrising.me/index.php?threads/what-might-remissions-mean.38954/page-2#post-623601

I had a number of instant remissions back when I was on Immunocal. They typically lasted for six hours. I did not always immediately notice them, I just felt normal. Then I realized that it really was normal. During this period my overall health was higher than for most of the decade before, I had moved to mild ME.

On occasion I have taken advantage of this in absolute amazement. One time I went from struggling to walk to being able to run for miles. This improvement was there and gone in six hours. Another two times my brain immediately kicked in. Of those two, in one I was suddenly able to solve tutorial questions on physical chemistry involving math (I was at uni) in my head, that before I was struggling to do at all. On another occasion was right before an exam. My reading speed suddenly went from struggling to thousands of words a minute. I mean really really fast. That remission lasted long enough for me to finish the exam. On reflection most of these occurred during a natural rise in stress - good stress mostly, such as seeing a movie at the cinema.

To me this indicates there is not huge structural damage even at the molecular level for a subgroup of us. Its about dynamic regulation of something. However this does not rule out severe damage that the body can sometimes compensate for, but such compensation is not sustainable.

I use a wave analogy, and its only an analogy, reality is more complex. Think of the causes of symptoms as waves, which wax and wane. Waves go up and down. There are numerous such waves. Spontaneous crashes without triggers occur when a bunch of these waves peaks coincide and reinforce each other. However, when the troughs of the waves coincide the symptoms just go away. It might be rare, but it can happen.

In reality these waves are biochemical signals, They are however not constant. They will wax and wane with various biochemical factors, including regulating systems.

That leads me to at least two possibilities. Either some dynamic system, probably involving brain and hormones, is driving the symptoms. Or the same dynamic system is fighting the damage, and can sometimes overcome it on a temporary basis. Of course these two are not mutually exclusive.

http://forums.phoenixrising.me/inde...sion-followed-by-a-relapse.37109/#post-589614

I had a 2-3 year remission at some time after being an extremely severe ME bedridden patient. I was COMPLELTELY recovered, I even did a 100km fund raising marathon (one of the worlds longest marathons) while I was in this remission with no issues, no crash..[..]

 

[Mohawk1995]

Not all of them. Just the ones who persist in insisting on their involvement with the patients that they fixate upon.

British humor I assume...I get it. FYI my involvement in supporting the ME community and awareness of ME is not limited to my posts on this forum. There are other avenues I have taken as well that seem to be more constructive. Furthermore I am not the clinicians that treated you or the others. I am a participant, just the same as others, who is attempting to spur honest and open discussion. I do not actively join the Chat line because I feel that seems more personal to those who suffer from ME. I have my thoughts, opinions and theories just as you do. It appears that the difference is that I attempt to find points of agreement first and then build from there disagreeing when I feel it is appropriate.

 

[Mohawk1995]

You don't know. You're hypothesizing. You're making shit up. I have spent a lot more time on this forum than you and have read about spontaneous remissions. Not a single one of them complained about residual effects.

I am absolutely hypothesizing! This is a forum for discussion. Seems there are some who don't want it to be open discussion.

I am not making excrement up although you are entitled to your opinion. I am taking years and years of research on the human body, how it functions, how it responds and how anything we can do in medicine can impact that. In addition, I have seen thousands of patients and have seen first hand how their body responded to procedures, medications, therapy interventions and all manner of stresses from their environment. ME is a specific manifestation, but there are many features that it shares with other disorders in the body including Chronic Lyme disease, Mitochondrial Syndrome, MCAS, Fibromyalgia, Complex Regional Pain Syndrome, Post Concussive Syndrome, Migraines and all types of Chronic Pain disorders. It is these factors that I build my hypothesis on. I am open to being proven wrong, but nothing (not even the spontaneous remission stories) has enough support to do so as of yet. For that matter, although there are some long term remission/recovery stories that appear to support my thinking, I don't have the support to prove my hypothesis either, but time will tell. It tells no lies.

 

[CFS_for_19_years]

@Mohawk1995

I also have fibromyalgia, and that completely disappeared during my brief remission.

I remain convinced that physio support won't be necessary.

You're convinced it will. So be it.

 

[Valentijn]

I am taking years and years of research on the human body, how it functions, how it responds and how anything we can do in medicine can impact that.

Perhaps you could read some biomedical research into ME as well. I think it would be much more pertinent to ME.

ME is a specific manifestation, but there are many features that it shares with other disorders in the body including Chronic Lyme disease, Mitochondrial Syndrome, MCAS, Fibromyalgia, Complex Regional Pain Syndrome, Post Concussive Syndrome, Migraines and all types of Chronic Pain disorders.

These conditions have very little in common, aside from quacks claiming they're all psychosomatic. Actual scientific research shows different abnormalities and/or different disease processes at work.

 

[Mohawk1995]

@Valentijn Again aligning me with others I do not agree with. When you read my writing you are confusing Neurophysiological with Psychosomatic. They are not the same. Just because something is Neurophysiological does not mean it is Psychological or Conscious. I am talking about Neurophysiological functions that are far more powerful than how or what we think. The notion of "psychosomatic" is physiological child's play compared to the functions I am referencing. That is why I agree with you that applying that theory in primary ME treatment is foolish at best and harmful at worst.

And yes I am well aware of the biomedical research in ME. The work at Stanford, Norway and others is fascinating and I support it completely! But nothing I think counters what they are finding. I think you will be surprised when the true mechanism of this illness comes into light and we find out what is driving the biochemical, hormonal and cellular changes in the bodies of ME patients. I am thinking it has to do with what controls and oversees the function of the Endocrine System and especially the Pituitary, Pineal and Adrenal Glands. It is very physiological indeed in my thinking.