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

[Valentijn]

The other question then becomes, what level of activity is a person with ME able to tolerate and would there be benefit in a "GET" program that spreads the "gradual" increase over weeks, months or even years?

No, there's no benefit. Increased activity from a structured program either comes at the expense of more practical activities, or it triggers a crash.

Because no one has studied this, there is not an answer as of yet.

It was studied extensively in PACE. The GET in that trial was very responsive to symptoms, even though that's not the symptom-independent version of GET sold as the ideological cure for their psychosomatic ME/CFS model. PACE lasted 52 weeks, and followup was at 2.5 years, if I recall correctly. There was no benefit for GET over other therapies or no therapy.

 

[Wolfiness]

It's very shocking when you think how much further forward research should have been in the understanding of ME.

OK we wouldn't have had metabolomics and the more recent immunological testing etc BUT we could have been legitimately physically ill, not subjected to the psychiatric paradigm and all the physical, mental and emotional abuse that comes with that.

Absolutely devastating to think that all they had to do was listen and believe us.

 

[Mohawk1995]

No, there's no benefit. Increased activity from a structured program either comes at the expense of more practical activities, or it triggers a crash.

Not arguing with you on this point, merely asking the question first how to determine what activity level is best for a given patient. I believe that answer will be based in both patient's tolerance/feedback/response to activity and metabolic/biochemical markers and values which are being explored currently. If ME sufferers are going to ever return to full functioning (I certainly hope we will see), I do not believe that it will always happen as a result of treatments that impact the primary metabolic/biochemical/neurophysiological issues only. There are many secondary physiological issues that will need to be addressed with at least a portion of those in the recovery process even if primary treatments are effective. It will require the ability to measure that progress on many levels to ensure consistent success.

It was studied extensively in PACE. The GET in that trial was very responsive to symptoms, even though that's not the symptom-independent version of GET sold as the ideological cure for their psychosomatic ME/CFS model. PACE lasted 52 weeks, and followup was at 2.5 years, if I recall correctly. There was no benefit for GET over other therapies or no therapy.

I do not believe what I am suggesting was part of the PACE study. From what I have read of this study, "treatment" was not provided beyond 36 weeks and typically not beyond 26 weeks. It was not provided in what I would term a "therapeutic" environment meaning with a individually dedicated healthcare professional who acknowledged that the person had a disease state that was physiological. It was a sterile environment which is typical of research and was not practical or very reproducible in a clinic setting. I do agree that the GET provided did not appear to be the same as the "Wesselites" seem to favor (which is completely inappropriate).

Maybe it is there, but I also cannot find any differential results from the trial with Mild versus Severe cases. My assumption is that the participants were of mild to moderate severity because there is no way severe cases could have participated. Again, I agree that especially as proposed the whole approach is a big fail, but it is difficult for me to understand exactly why because so many variables are unaccounted for especially when attempting to translate the study to the real (clinical) world.

Lastly, don't get me wrong I do not believe that CBT, GET, PACE or any other physical activity based treatment is the "cure" for ME. Our experience was that it was not. His initial positive response was to biochemical/metabolic/neurophysiological based treatment. After that, some components of our sons recovery could be classified as CBT or GET, but they were very individualized and it was a 3 year process.

 

[Snow Leopard]

The other question then becomes, what level of activity is a person with ME able to tolerate and would there be benefit in a "GET" program that spreads the "gradual" increase over weeks, months or even years? Because no one has studied this, there is not an answer as of yet. Although it is anecdotal, our experience was that once our son was able to tolerate an increase in activity, it required 3 years of gradual increase of activity to reach his level today (attending school and working in warehouse loading trucks).

Required or permitted? Perhaps his health simply improved (spontaneously) over time to permit this gradual increase of activity?

Our symptoms don't seem to be directly due to deconditioning as studies show no relationship between exercise capacity and severity of symptoms (or change in capacity vs improvement). I had above average exercise capacity for my age (as tested in 2 day CPET when I was 32) yet I still have constant pain, weakness, headache, brainfog due to 'fatigue'.

 

[Research 1st]

There are many secondary physiological issues that will need to be addressed with at least a portion of those in the recovery process even if primary treatments are effective. It will require the ability to measure that progress on many levels to ensure consistent success.

Can you please list some of the 'many secondary physiological issues' that need to be addressed that you feel a primary treatment won't work for?

Thanks.

 

[Research 1st]

It was studied extensively in PACE. The GET in that trial was very responsive to symptoms, even though that's not the symptom-independent version of GET sold as the ideological cure for their psychosomatic ME/CFS model. PACE lasted 52 weeks, and followup was at 2.5 years, if I recall correctly. There was no benefit for GET over other therapies or no therapy.

We should also not forget the 'ME' patients in the PACE trial were mental illness criteria Chronic Fatigue (F48.0) - Oxford criteria created by psychiatrists no less. This means having mental illness at the time of diagnosis of 'CFS' wasn't a reason to exclude them, they could also have a prior history of mental illness before their 'CFS' developed! Both of these 'red flags' stop patients in a doctors office from getting a diagnosis of Fukuda CFS, never mind CCC CFS/ME-ICC, yet in PACE by using F48.0 Oxford, it gains them entry to become a false ME CFS patient.

I think this is pretty important to add (in our own minds, all of us), because the PACE trial despite this level of rule changing of who/what an ME CFS is, still utterly failed to treat mental illness criteria CFS. As ME and organic CFS aren't mental illnesses, then we can see the PACE trial is just total and utter trash, not just for the mentally ill, but for all descriptions of ME CFS, genuine and non genuine.

 

[Valentijn]

Not arguing with you on this point, merely asking the question first how to determine what activity level is best for a given patient.

The same way other human beings do, pretty much. If it makes us sick, it's too much. Heart rate monitors can provide an additional indicator for avoiding over-exertion.

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 seems an odd thing to worry about. Like "what activity is best for a cancer patient" or for an MS patient, or someone with the flu, or any other person who is ill. Activity is the last thing we need to worry about, aside from scrupulously avoiding too much of it.

 

[Mohawk1995]

Required or permitted? Perhaps his health simply improved (spontaneously) over time to permit this gradual increase of activity?

Our symptoms don't seem to be directly due to deconditioning as studies show no relationship between exercise capacity and severity of symptoms (or change in capacity vs improvement). I had above average exercise capacity for my age (as tested in 2 day CPET when I was 32) yet I still have constant pain, weakness, headache, brainfog due to 'fatigue'.

I see your point, but it did "require", meaning he had to choose to work through not only physically becoming more active, but also emotionally and socially working through a process. This went hand in hand with his health naturally improving. As a Physical Therapist I have great respect for the body's capacity to heal and the natural or spontaneous processes involved in recovery. In fact, I am of the opinion that treatment is merely the effort to establish an environment in which healing can occur and not performing the actual healing.

I would also agree that the loss of function is due to the physiological ramifications of the metabolic shut down in ME and not primarily as a result of deconditioning. I do, however believe, based on years of seeing patients, that many (not all) people who would be able to recover from ME due to a "new treatment form", will require guidance, coaching and monitored progression to optimize the natural healing process as it occurs. Then in the end, the clinician who provides this would say "well done" and seek very little to no credit for the improvement. Some (and I could not tell you the percentage) will be able to recover without assistance. A very small percentage will get stuck and have great difficulty returning to full function even though the new treatment opened the door to allow them to.

Seems to me that there are too many out there wishing to seek credit for curing or helping people when they should be congratulating the patients and being thankful that we have a body that can actually heal (which still fascinates me!).

 

[Mohawk1995]

It seems an odd thing to worry about. Like "what activity is best for a cancer patient" or for an MS patient, or someone with the flu, or any other person who is ill. Activity is the last thing we need to worry about, aside from scrupulously avoiding too much of it.

Not odd at all. This is not a question for the clinician to benefit from, but for the patient to benefit from. Activity is what we are physiologically made for. When it is limited or restrained, that is not a good thing. Activity activates all of the systems in our body and allows us to maintain or improve our health. It is the very lack of activity that ME creates that is the second bad thing that happens in this disease (the first being the metabolic shut down). I don't think we need to "worry about it", but we should be very concerned by the lack of ability to be active. It's physiological, sociological, psychological and spiritual consequences are immense. Any treatment that ignores its impact will lessen the potential that treatment has to help.

I can see why some are hesitant to even discuss "activity" and "exercise" after what has been done. My attempts to discuss this are not to dredge up what has been inappropriately done in the past. I just think that this disease has such a massive impact on people, that they will require support to resume their lives even when a truly effective treatment is identified. For some, it won't be needed I agree. But whatever treatment is found to be effective (and I hope it is found soon!) there will still be months and years of recovery needed. For most people it won't just spontaneously happen.

 

[Mohawk1995]

Can you please list some of the 'many secondary physiological issues' that need to be addressed that you feel a primary treatment won't work for?

It will depend primarily on the person and their level of severity. For the severe patient, there could be muscle weakness, joint contractures, cardiovascular pathology, peripheral neuropathies, residual pain disorders, balance and proprioception issues, digestion issues, cognitive processing issues and changes in sensation and sensory functions.

For the less severe it may only be one or two of the above.

In my experience the following factors will play a role in the equation:

• Duration of the ME disease presence
• The Severity of the disease
• The presence of remissions or breaks from the disease
• The genetic/physiological predisposition of the person

Disease of long duration, high severity, lack of remission/breaks and a strong genetic predisposition for cardiovascular, digestive, other auto-immune disorders or any other disorder will significantly increase the likelihood that these will be secondary physiological issues that will need to be addressed.

 

[slysaint]

@Ben Howell @JaimeS
Do you think blood samples from pre PEM and then during PEM would show up anything along the lines of research that Ron Davis is doing? (Although I realise this would be a big ask for patients; shame it wasn't done during all the 'exercise' based trials).

 

[ukxmrv]

It will depend primarily on the person and their level of severity. For the severe patient, there could be muscle weakness, joint contractures, cardiovascular pathology, peripheral neuropathies, residual pain disorders, balance and proprioception issues, digestion issues, cognitive processing issues and changes in sensation and sensory functions.

For the less severe it may only be one or two of the above.

In my experience the following factors will play a role in the equation:

• Duration of the ME disease presence
• The Severity of the disease
• The presence of remissions or breaks from the disease
• The genetic/physiological predisposition of the person

Disease of long duration, high severity, lack of remission/breaks and a strong genetic predisposition for cardiovascular, digestive, other auto-immune disorders or any other disorder will significantly increase the likelihood that these will be secondary physiological issues that will need to be addressed.

We won't know until the primary "problem" and cure are found so it's all guesswork really. No reason why digestive or cardiovascular or pain disorder issues won't clear up if the problems are all from one cause.

It's not all going to be plain sailing for us all. A cure won't return to me my career or the ability to have children but I will be able to live a life as best as it can be day to day. The older I am when a cure is found the more likely that I will have died from cancer or heart disease as we don't live forever.

It's going to vary of course. Lynne Gilderdale had Osteoporosis.

However the list you provided seems like unnecessary catastrophising for no good reason.. as yet.

 

[Mohawk1995]

@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. In the case of our son, who had mild to moderate ME, he had to address 4 of these issues that did not go away immediately within the 3 years following successful treatment. I am confident that a great deal of his recovery happened naturally, but he still required assistance in these 4 areas.

I definitely agree with your comment about plain sailing and if I ever sound like I am saying any of this will be, please forgive me that 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.

I as a Therapist want to help others. I don't have the ability or the authority to prescribe medication or perform invasive procedures. I am primarily relegated to applying physiological input or advocating changes in physiological activity that results in a response that improves one's condition. I believe based on my experience that there will be need for this when the effective primary treatment arrives on the scene. Not all patients and not a need because I think there should more therapy out there, but because there will be patients who need assistance to get them as healthy as possible. I want to make sure we as a medical community and as a therapy profession are ready to help when the time is right. Proactive and not Reactive.

 

[Valentijn]

I as a Therapist want to help others.

Currently the best way physiotherapists can help ME patients is by leaving them alone. You have a "belief" that you can help, but it's not based on anything, except perhaps the necessity of seeing your profession having a purpose in everyone's lives. It doesn't. And if there is a role for physiotherapists in ME some day, the ones who embrace science rather than their personal beliefs will be of far more use, and far less dangerous.

There is literally no point in figuring out how to best cure the "many" ME patients who you apparently believe aren't capable of reacting normally when their illness is cured. It's putting the cart before the horse to a ridiculous extent.

Personally, I find that predatory desire for any specialty to claim a group of patients, in the lack of evidence, to be very unpleasant. I don't want help from people with good intentions and no clue of how to help me, or any apparent capacity to do so. I want good science, and then we can figure out what's needed when the disease is better understood.

I have a strong aversion to a variety of therapists as the result of medical mistreatment I've experienced as an ME patient, and your insistence on imposing your profession into my disease is bringing up a great deal of unpleasantness.

 

[JaimeS]

@Ben Howell @JaimeS
Do you think blood samples from pre PEM and then during PEM would show up anything along the lines of research that Ron Davis is doing? (Although I realise this would be a big ask for patients; shame it wasn't done during all the 'exercise' based trials).

Do you mean, would the metabolites produced post-exercise give us any cues? Almost certainly. But that's hard to ask of people you know many be quite a bit worse afterward.

Moreover, the individuals who can perform such exercises are -- de facto -- 'very minor' patients. Maybe 'very very minor'. I'm now capable of what I consider some pretty impressive levels of activity for an ME patient... so long as they don't go on for long. That is, 5-7 minutes of intense activity seem okay, so long as I can sit and return to baseline before engaging again. 15 minutes of sustained activity of any sort would probably make me feel pretty awful, and I am now the most well ME person I know. 30 minutes of continuous activity sounds like a nightmare.

It was great that in this study they did it by heart rate, but it's a shame they insisted on doing it so long.

 

[Snowdrop]

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.

 

[Snowdrop]

Then in the end, the clinician who provides this would say "well done

Sorry, this pat on the head sounds patronising and infantilizing.

 

[Mohawk1995]

@Valentijn You can have your opinion and I can have mine. I wonder what you refer to when you say "good science". I can tell you that for many people good science has led to treating patient "populations" with protocols that are the result of averaging the averages. Population Health, Clinical Prediction Rules, Best Practices and even so called "Evidence Based Medicine" (not true EBM) are almost all the results of good research. The problem is that they do not account for those whose complex condition places them at the edge of these very statistics (severe ME not being included in studies of CBT/GET for example). Thoughts of good science in medicine that is strictly laboratory science most often do not translate to the real world of actually treating patient. It is in the "science of the application" that they are most often lacking. My opinions are my opinions, but I can assure you that they are based on far more science (Laboratory, Clinical and Empirical) than you suggest.

There is also a suggestion in what you are saying that I don't believe many ME patients are capable of "reacting normally" when their illness is "cured". That would then suggest that I think they are not acting normal now and I assure you that I do. I find most people who post on this forum to communicate in ways that would be considered in the norm. Polite, respectful, melancholy, angry and even disagreeing vehemently and being argumentative. All completely normal. I have no doubt most would, if given the opportunity respond normally if an effective treatment for the primary pathology of ME was found. What I have found though is that will alone is not always successful in overcoming years of pathology's impact on the human body. Even if that will applied in normal ways. I am definitely not questioning the mental health of anyone with ME (nor anyone on this forum) even if they struggle to recover.

Lastly although I am not sure it matters, I would like to apologize on behalf of the Therapy profession. If what you experienced was the CBT/GET model that has been proposed in the UK and places like Mayo as a primary treatment for ME/CFS then in my opinion you were wronged. That is especially true if you were not listened to during the process. An approach like that is a shameful one that has caused many hurts and more. If you have read my posts (especially my recent ones), you know that I am vehemently opposed to the treatment that it appears you and others received at the hands of Therapists whose primary fault was practicing "science" without the real time and ongoing assessment of the patient's response. I would argue that is not science!

The convictions I have as a therapist have been born over years of listening to patients, adapting treatment delivery based on their response and yes adapting treatment even based on their temperament or personality to gain the best possible outcome for them. I have discontinued therapy with those I am not helping. I have recommended other treatments at the loss of my ability to be reimbursed for the patient's care. I have turned away patients I had no business treating and referred them back to their physician. Yes, I "believe" in the power of a positive therapist-patient relationship. It is a partnership in a manner that rarely occurs in today's medicine and whose sole purpose is to help the patient improve. The world of medicine you seem to advocate for seems cold, sterile, even lifeless, but if that is what is needed for you and others to improve then so be it.

I have never claimed to have the answers to every question. I also know that no person on earth will ever have those answers.

 

[Snowdrop]

I just think that this disease has such a massive impact on people, that they will require support to resume their lives even when a truly effective treatment is identified.

You mention that people on the road to recovery after proper medical treatment might need some assistance.
Physical, mental, spiritual. Thanks so much.

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.

If you were to poll people who are ill with ME I would think that they would be very glad indeed to get some semblance of normality back. there certainly is the possibility of (for example) grieving for what was lost that might come forward but that does not mean most people would need guidance. As I said, there would probably be more that would be grateful for practical help.

Anyone who needed more would be free to seek out help not just through continued care but through their community in a variety of ways.

Then there's my bias to deal with. I don't trust the kind of help that is preemptively offered 'cause I'm gonna need it'.

Edit to add: As is being discussed on another thread
(see: http://forums.phoenixrising.me/inde...nderstand-why-were-ignored.50791/#post-838604) it's also possible that people who get well after something like this have gotten stronger and have different and more insights into aspects of human interaction that the well person does not.

 

[Mohawk1995]

Sorry, this pat on the head sounds patronising and infantilizing.

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.