ME/CFS: An evidence based approach to diagnosis and management

[dancer]

What troubled me is the assumption that if patients would only pace themselves, they'd improve.
That's not necessarily true. I utilize careful (necessary) budgeting of meager energy, and don't improve. I simply (perhaps) prevent worse levels of crashes.

I don't think people object to advice to doctors to encourage their patients to pace themselves. They object to seeing this presented as having the promise of curing patients.

There is also a bit of the same patronizing attitude we've seen in other behavioral approaches. "Teach the patient to push themselves" is just being replaced with "Teach the patient to rest." I would have appreciated advice to listen to my body and NOT push through symptoms early on. (Instead of the foolish - "you need more exercise" drivel). But after years of illness, and study into the illness that stole my life, a pat on the head and a "just rest when you're tired and you'll get better" prescription isn't all that helpful. I DON'T get better. There needs to be some honesty about the prognosis.

However, I agree this is a step away from the HARMFUL directions doctors were given on how to advise patients, so that's good.

 

[SOC]

So, my question is... Should patients who are newly diagnosed with ME/CFS have this (in my view: essential) information, and symptom management tool, withheld from them because there is a chance that pacing is corrupted by the medical profession?

Absolutely not. Patients should be taught about proper pacing from the moment ME/CFS is suspected. As @halcyon pointed out, it's a fundamental safety measure. It's not a treatment. The problem arises when phrases like this come up:

Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

This implies that pacing is a treatment that improves functionality. It's not. AFAIK, there's no evidence pacing improves functionality. It may improve symptoms by reducing functionality, but it doesn't treat ME/CFS or make us more functional -- at least not in any way a healthy person would recognize as more functional.

Let me be entirely clear on this point -- I think proper pacing is critical to managing ME at this point in time when our treatments are limited and our efforts are largely focussed on not getting worse and getting through each day.

The very first thing I did when I realized my daughter might have ME, even before I made an appointment with a specialist, was to enforce strict pacing. It is my belief that that is probably a major contributor to why she did not develop severe ME (as I did), why she responded better to treatment, and why after many major treatments she is now in or near remission. The pacing did not improve her condition; the treatments did. The pacing slowed her getting worse, reduced (in theory anyway) further damage to her body from forcing it to do more than was safe. Pacing allowed her to stay in college in a very limited way when she could not have continued in the normal way. I believe she benefited greatly from her parents strictly enforcing pacing, but it did not slowly improve her functionality. In fact, she continued to decline until she got appropriate biomedical treatments, just more slowly.

I wish I had known enough to pace properly when I first realized I was seriously ill. My situation might be better today.

I'm all for teaching proper pacing as exactly what it is is -- a safety and management tool, NOT a treatment. I am very much against overselling pacing as a treatment for ME that will slowly improve patients' functionality.

 

[lansbergen]

So, my question is... Should patients who are newly diagnosed with ME/CFS have this (in my view: essential) information, and symptom management tool, withheld from them because there is a chance that pacing is corrupted by the medical profession?

No.

 

[Keela Too]

I wish I had known enough to pace properly when I first realized I was seriously ill. My situation might be better today.

I'm all for teaching proper pacing as exactly what it is is -- a safety and management tool, NOT a treatment. I am very much against overselling pacing as a treatment for ME that will slowly improve patients' functionality.

I count myself as one of the lucky ones - I got good advice FROM OTHER PATIENTS very early on... it was still tough to do little enough. I recently talked about this at a conference at Queen's University Belfast... and in my presentation I emphasized the importance of other patients in saving me from harmful advice that my doctor had inadvertently given me.

As I wasn't well enough to actually be present, I did a pre-recorded audio PowerPoint. I'll share it again, as it seems sort of relevant here. 22 minutes:

 

[MeSci]

This implies that pacing is a treatment that improves functionality. It's not. AFAIK, there's no evidence pacing improves functionality. It may improve symptoms by reducing functionality, but it doesn't treat ME/CFS or make us more functional -- at least not in any way a healthy person would recognize as more functional.

I have not found pacing to reduce functionality. Who has?

 

[Keela Too]

I think the greater functionality that one can achieve without pacing is an illusion. Sooner or later the crash is gonna get you!

So, yes, to pace well - probably most people need to cut back on what they had been attempting to do. That might be seen as a reduced level of functioning... a reduced functionality perhaps?

However long term the level of functioning maintained through good use of pacing will be higher than the level of functioning retained by someone pushing on regardless and not attempting to pace appropriately... that's my view anyway.

 

[SOC]

I have not found pacing to reduce functionality. Who has?

Do you do more when you pace, or less? If you do less, then you are less functional.

I had to learn to do a LOT less, so I was much less functional by normal standards. I could no longer run errands, or even do housework. My daughter had to drop back from a full engineering student courseload and extra-curricular activities, to a bare minimum courseload, limited class choice to eliminate walking long distances, no clubs, no social activities. She could do almost no self-care -- not her own cooking, cleaning, laundry. So yes, we had much less roller-coastering and managed to maintain some function, but we were a lot less functional by any healthy person's standard. Our symptoms were less severe, which was a big positive, but we were not able to do more by pacing. We did less and felt better.

 

[SOC]

However long term the level of functioning maintained through good use of pacing will be higher that the level of functioning retained by someone pushing on regardless and not attempting to pace appropriately... that's my view anyway.

I agree that in the integral -- over months and years -- those who learn to pace are probably more functional in the end than those that destroyed their health by continuing to push until they end up bedbound.

 

[Keela Too]

Saying you can increase function by pacing is a bit like saying you can increase your income simply by budgeting carefully.

Pacing is a way of budgeting your energy to avoid the massive interest paybacks of PEM - which may also actually reduce your overall available energy income.

Careful budgeting may allow you to do a little "more" if you no longer have to pay back that interest... but that's all...

 

[SOC]

Saying you can increase function by pacing is a bit like saying you can increase your income simply by budgeting carefully.

Pacing is a way of budgeting your energy to avoid the massive interest paybacks of PEM - which may also actually reduce your overall available energy income.

Careful budgeting may allow you to do a little "more" if you no longer have to pay back that interest... but that's all...

Excellent analogy.

If we are currently overspending and driving ourselves into debt, our financial condition will continue to get worse until we learn to live within our budget. If we stop overspending and learn to budget our limited resources, we will have less and do less, but in the long run we will be in a better place because we have not bankrupted ourselves by continuing to overspend. So yes, we do less when we budget our resources, but we're probably happier with our lives in the longer term because we haven't dug ourselves into an even deeper hole.

 

[Bob]

I have not found pacing to reduce functionality. Who has?

It can reduce functionality in the short and medium term by a conscious/rational/adaptive decision to reduce activity levels as a protective measure and part of the activity management strategy.

 

[MeSci]

Do you do more when you pace, or less? If you do less, then you are less functional.

I had to learn to do a LOT less, so I was much less functional by normal standards. I could no longer run errands, or even do housework. My daughter had to drop back from a full engineering student courseload and extra-curricular activities, to a bare minimum courseload, limited class choice to eliminate walking long distances, no clubs, no social activities. She could do almost no self-care -- not her own cooking, cleaning, laundry. So yes, we had much less roller-coastering and managed to maintain some function, but we were a lot less functional by any healthy person's standard. Our symptoms were less severe, which was a big positive, but we were not able to do more by pacing. We did less and felt better.

I think that I am able to do more overall by pacing. Without pacing I would keep getting PEM, which would make me very non-functional. Now I am in more of a 'steady state'. I can usually do something at short notice if I need to, because I am not feeling ill, nauseous, weak, etc. I sleep better, so I am not so exhausted.

But I very rarely get bursts of sudden, adrenaline-type energy now, or such manic determination to continue an activity, which is good health-wise. I find it easier to perceive when I need to stop, and to do so, without that being outweighed by the urge to continue.

I feel as though my body and mind work better overall, which is what I think of as functionality. This includes things like vision, digestion, cognition (I think), sleep/wake cycle, I can often stand for quite long periods now, and don't have difficulty raising my arms any more. I don't think that this is from pacing alone though, but also from my diet-and-supplement regime started in 2012.

 

[MeSci]

It can reduce functionality in the short and medium term by a conscious/rational/adaptive decision to reduce activity levels as a protective measure and part of the activity management strategy.

OK, I think it's an issue with our perceived definitions of the word 'functionality'!

 

[SOC]

OK, I think it's an issue with our perceived definitions of the word 'functionality'!

Probably.

I definitely feel better as a result of pacing and can have my own type of normalcy by achieving a level of stability I didn't have before I learned to pace. I consider that a big deal in terms of QOL. Roller-coastering, push-crash, whatever you want to call it, is hell. It's living in chaos with no predictability, which makes it impossible manage anything. Achieving some level of normalcy, even if it's very abnormal by healthy standards, is a relief. But by any common (as in that used by a healthy person) definition of more functionality, I didn't get it from pacing. I didn't achieve more in terms of paid work, activities of daily living, or social activities as a result of pacing. Far from it.

We laugh at the PACE crew and their redefinition of words to suit their own sick purposes, but I think we tend to redefine some words in our own little world context as well. Our 'somewhat normal' is nothing a healthy person would call normal. They wouldn't recognize our 'more functional', although we probably value our 'more function' and understand what other ME patients mean by it. As for 'mild'.... mild ME is far from mild by any healthy person standard. Context is everything, I guess.

 

[TiredSam]

As for 'mild'.... mild ME is far from mild by any healthy person standard. Context is everything, I guess.

Amen to that.

 

[Kati]

We all want biomedical treatments but, according to the research, antivirals and Ampligen are not effective for the vast majority of patients. A small minority of patients respond well to them. That's partly why they're struggling to convince the authorities to approve them. If my memory serves me well, they are trying to identify subsets who might respond to antivirals and Ampligen. As for immune modulators, my understanding is that they have little benefit as a rule. I think Nancy Klimas uses Imunovir but my understanding is that it has limited benefit. I've found gabapentin useful, but the side effects were severe so i couldn't continue it.

The work of Dr Montoya and his team is showing that Valgancyclovir (Valcyte) is effective in a subset of us.

J Med Virol. 2012 Dec;84(12):1967-74. doi: 10.1002/jmv.23411.
Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers.
Watt T1, Oberfoell S, Balise R, Lunn MR, Kar AK, Merrihew L, Bhangoo MS, Montoya JG.
Author information

Abstract
Valganciclovir has been reported to improve physical and cognitive symptoms in patients with chronic fatigue syndrome (CFS) with elevated human herpesvirus 6 (HHV-6) and Epstein-Barr virus (EBV) IgG antibody titers. This study investigated whether antibody titers against HHV-6 and EBV were associated with clinical response to valganciclovir in a subset of CFS patients. An uncontrolled, unblinded retrospective chart review was performed on 61 CFS patients treated with 900 mg valganciclovir daily (55 of whom took an induction dose of 1,800 mg daily for the first 3 weeks). Antibody titers were considered high if HHV-6 IgG ≥ 1:320, EBV viral capsid antigen (VCA) IgG ≥ 1:640, and EBV early antigen (EA) IgG ≥ 1:160. Patients self-rated physical and cognitive functioning as a percentage of their functioning prior to illness. Patients were categorized as responders if they experienced at least 30% improvement in physical and/or cognitive functioning. Thirty-two patients (52%) were categorized as responders. Among these, 19 patients (59%) responded physically and 26 patients (81%) responded cognitively. Baseline antibody titers showed no significant association with response. After treatment, the average change in physical and cognitive functioning levels for all patients was +19% and +23%, respectively (P < 0.0001). Longer treatment was associated with improved response (P = 0.0002). No significant difference was found between responders and non-responders among other variables analyzed. Valganciclovir treatment, independent of the baseline antibody titers, was associated with self-rated improvement in physical and cognitive functioning for CFS patients who had positive HHV-6 and/or EBV serologies. Longer valganciclovir treatment correlated with an improved response.

Copyright © 2012 Wiley Periodicals, Inc.

http://www.ncbi.nlm.nih.gov/pubmed/23080504

A 52% response rate is a dream response considering that many rheumatoid arthritis drugs do not reach a 30% response rate.

So why is this clinical trial not being replicated? Why is this not considered evidence based by the same country that published the so called evidence-based diagnosis and management?

Here is my idea as of why, with keeping in light that I was seen by the same author of the paper:
- the author published a book on self-management.
- she promotes a natural approach, based on naturopathy, meditation and pacing
- the larger community of physicians here believe the pace trial like they believe in Santa Claus, thanks to Cochrane review.
- there is absolutely no research funding for ME in Canada.
- Valcyte is only approved for HIV patients and those with active CMV infection in post transplant population
- Valcyte is expensive.
- if patients improve on pacing, meditation, naturopathy, and self-management, then why on eath would you introduce the belief that they actually need medication?

I am not against pacing. i just do not need a 40 hour class on it. i need access to treatments that give me a chance at significantly improve my functionality and quality of life. I have been lucky enough to have a chance at a few line of treatments, including a 14 months course of Valcyte which gave me 4 hours of outside time each and every day. Funding assistance was cut off this last May, and I have lost all gains and these days i am back to housebound and foggy brain.

Please don't tell me I need to pace more. Most of us here have been sick for decades. If your health care system suddenly offered a ME program but only offered self-management program, which involved attending classes every week where you learnt nothing new, knowing you improve on a drug, wouldn't you feel insulted? This class may be good for newbies, but not seasoned patients who already know how to pace and how to manage their day to day living.

 

[SOC]

A 52% response rate is a dream response considering that many rheumatoid arthritis drugs do not reach a 30% response rate.

This is an important point. Treatments considered appropriate for other illnesses are not required to have a near 100% response rate, especially in early studies. Yet in ME even patients complain that these treatments are insufficient or "only good for a subset" and dismiss a treatment that would be welcomed with open arms for other diseases. The patients won't even try the treatment because it's not a known cure. What's the deal? Are we brain-washed into thinking that only treatments that directly treat ME (when we don't even know what the root cause is) in 90+% of patients should be considered? Other patient groups don't think that way. Health agencies don't think that way about other diseases. Why us?

have been lucky enough to have a chance at a few line of treatments, including a 14 months course of Valcyte which gave me 4 hours of outside time each and every day. Funding assistance was cut off this last may, and I have lost all gains and these days i am back to housebound and foggy brain.

That is heart-breaking. I'm sorry that happened to you. We deserve better.

 

[alex3619]

OK, I think it's an issue with our perceived definitions of the word 'functionality'!

Yes, this is a rubbery term. Increasing or decreasing general functional capacity is not the same as being able to do more of the important things, which pacing allows by limiting or curtailing the less important things. Whether more is being done in total, or less in total, is different to asking whether we get more of the most important things done.

Using a budgetary analogy (which has been around for many years, along with energy banks and spoon theory) we are selecting to buy only the most important things rather than trying to buy a lot more and finding a maxed out credit card or having to curtail buying even the most important things. When we have to spend money its like we ask ourselves, can we afford this? Is it important enough? Maybe we buy it anyway and accept a small temporary debt, if something is really important to us. Or maybe we simply pass on it and then reconsider later when our budget looks better. This analogy is not great in all ways because it does not allow for issues of timing.

We need to disambiguate what we mean by functional - which is a word I hate because it has even more implied meanings as used by others such as psychiatrists.

 

[alex3619]

Are we brain-washed into thinking that only treatments that directly treat ME (when we don't even know what the root cause is) in 90+% of patients should be considered? Other patient groups don't think that way. Health agencies don't think that way about other diseases. Why us?

Most treatments do not have a fantastic success rate, for most diseases and conditions. If one treatment were to work fantastically, why are there so many alternatives? Doctors keep switching treatments hoping to find one that kind of works, rather than hoping for an instant cure.

I started writing a blog discussing the kinds of fallacies here, but its mostly still not written. Cancer does not have one treatment. Yet people are cured. Oh wait, now we have specific cancers, such as lung cancer. Those treatments are not fantastic, yet people are cured. Oh, but wait, there are specific subtypes of lung cancer with specific markers and metabolism and using that knowledge we can cure even more ... although with cancer they prefer the term remission as one missed cancer cell can bring the problem back.

Now take depression. Nobody doubts that depression can be a terrible symptom. Yes, symptom. Its not clear its a disease. Its taking a common symptom and defining it as a disease. Much like calling chronic fatigue ME. Some patients get better with vitamins. Some with time. Some with antibiotics or antivirals. Depression is a symptom right up there with pain or fatigue, until you get to the specifics you cannot be sure what is actually being treated, only how people say they feel. It is not clear that antidepressants cure it either, only mask the symptoms much like aspirin can mask a headache without removing whatever is driving chronic headaches.

ME is like that. Its not chronic fatigue. CFS is not chronic fatigue either. Both can have chronic fatigue as a symptom, and its mandatory for CFS, but ME also has headaches. Are we going to call it chronic headache syndrome?

Pacing as a management strategy has been found helpful by a great many patients. Its no cure, or we would have huge numbers of cures being discussed, because pacing is so very popular.

However discussing an article based on one problematic sentence, when we haven't read the full article, is not worth a lot of effort. Not with so much else going on.

On the other hand, every time we go over the reasons for why these claims can be problematic we are bringing these issues to light for newer patients, or people who are just new to this forum. That has value too.

We are going to have to accept subgroups, and alternative treatments. That is the nature of medicine. What is the issue is that there has not been enough research on subgrouping, whereas the extreme lumpers (all unexplained chronic fatigue is the same etc.) have been pushing their theories for a long time.

 

[Kati]

We are going to have to accept subgroups, and alternative treatments. That is the nature of medicine. What is the issue is that there has not been enough research on subgrouping, whereas the extreme lumpers (all unexplained chronic fatigue is the same etc.) have been pushing their theories for a long time.

The trend here in Canada (and seemingly, Denmark) is to 'super-group' patients under the Central Sensitivity Syndrome' umbrella. Absolutely scary. Then the alternative, low cost, low impact interventions prevail.