Your family, friends and even your doctor may, probably will at some point, prod you to get moving. They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you are and how little they understand what you are going through.
Wouldn’t it be nice if a little exercise was all you needed? Unfortunately ME/CFS is not that simple…Check out some ways to explain why that is.
You have to cut them some slack, though. You may, after all, look like you’re the picture of health. Plus we all intuitively sense that exercise, in general, is good for us and bedrest can make things worse. From the outside exercise might look like just the ticket. They are only trying to help.
Well, exercise is a ticket – but usually not to better health. While doing what you can within the parameters of your illness to maintain your fitness is a good thing in any disease, vigorous or even light exercise almost always has negative effects.
But how to convince your family, friends and even your doctor of that? It may take some hard evidence. Below are some suggestions that may help some well-meaning friends, family members and even doctors understand about exercise in chronic fatigue syndrome (ME/CFS).
#1 – Tell them studies show that your symptoms can get worse – much worse.
They want you to feel better, right? Tell them that while vigorous exercise actually reduces pain levels and helps healthy people think better, studies indicate that even bouts of submaximal exercise increase pain sensitivity in ME/CFS and cause more cognitive problems. Vigorous exercise provoked symptoms of fatigue, light-headedness, muscular/joint pain, cognitive dysfunction, headache, nausea, physical weakness, trembling/instability, insomnia, and sore throat/glands in one group of ME/CFS patients.
#2 – Knock out the deconditioning deception, if it shows up.
ME/CFS is not deconditioning nor are its symptoms explained by inactivity. The debility in ME/CFS is much greater than is seen with deconditioning The Workwell Foundation
Yes, but your doctor says those symptoms are occurring because your muscles and cardiovascular system are deconditioned. You just need to get conditioned again!
If only that were so. If you are deconditioned (as is likely if you’re bed or homebound), note that and then tell him/her that a large study just found that deconditioning played no role in the reductions in energy production found during an exercise study. Deconditioning may be present but it’s not causing ME/CFS.
#3 – Point out the negative physiological effects exercising has on ME/CFS.
OK, they say – so exercise makes you feel bad. But shouldn’t you do it anyway? Just to keep up your strength and fitness? Come with me to the gym…
There is certainly something to be said for being as fit as possible in any disease, but studies indicate that vigorous exercise doesn’t just make people with ME/CFS feel worse – it actually damages them physically.
Studies indicate that even short-term bouts of vigorous exercise have detrimental physiological effects on people with ME/CFS.
Studies indicate that vigorous exercise impairs an ME/CFS patient’s ability to produce energy and to think, and negatively impacts the functioning of their brain and their autonomic nervous, gastrointestinal, and immune systems. Exercise appears to produce a burst of inflammation in ME/CFS which results in increased oxidative stress and immune, autonomic nervous system and hormonal changes.
In fact, exercise discombobulates so many systems in ME/CFS that it’s regularly used by researchers to understand this illness. A multi-year study underway at the NIH’s Intramural Hospital is using an exercise challenge to do just that.
Thanks, but you’re going to skip the gym…
#4 – Highlight the unique response to exercise found in ME/CFS.
But, but, but, but, but your friend (or doctor) says, people with heart problems, chronic obstructive pulmonary disease (COPD), diabetes, arthritis and other diseases benefit from exercise. People die from heart disease and COPD and they can exercise. Are you saying that ME/CFS is different from all those terrible diseases?
Yes! Tell them that the evidence to date suggests that the exercise problems in chronic fatigue syndrome (ME/CFS) are unique. Unique, as in – not found in any other disease.
Two-day exercise tests indicate that vigorous exercise in ME/CFS actually damages a person’s ability to exercise. That’s very unusual. People with all sorts of serious diseases like heart failure, pulmonary hypertension, and kidney disease can at least tolerate exercise. It’s not so with ME/CFS: the main energy production system in the body (the aerobic energy system) is broken.
#5 – Besides – tell them it’s been tried…and it didn’t work out so well.
Tell them millions of dollars have been spent using an approach called graded exercise therapy (GET) that seeks to have people with ME/CFS exercise more. Tell them that the field is fraught with problems. A recent review of those studies was actually withdrawn by the journal editors because they felt the reviewers overstated their case. Tell them that that rarely happens in the medical field but it’s almost par for the course with regards to GET and ME/CFS.
The largest study ever in ME/CFS – the PACE trial – had so many problems that a journal devoted an entire edition to exploring them.
One huge trial, apparently struggling to get positive results, so dramatically changed their criteria for success that some people with ME/CFS were considered recovered at the time they entered the trial. (Even then the results were mediocre. When another group used the original criteria for success, even those small benefits disappeared.)
Called the PACE trial – the biggest ever in ME/CFS – that study was so poorly done that an entire issue of a medical journal was devoted to exposing its weaknesses. One hundred academics recently signed a letter asking that the results of the trial be re-analyzed.
After a review by an independent group found little evidence that GET works in ME/CFS, the Centers for Disease Control promptly stopped recommending it. This year – the Dutch Health Council – long the bastion of a GET approach to ME/CFS – did the same.
Get the picture? If your doctor thinks they know about exercise and ME/CFS and they’re putting you on a graduated exercise plan that increases your exercise every week, they’re getting some bad information. The GET field is plagued with bad studies which at their best produce mediocre results.
Were you a couch potato pre-ME/CFS? It doesn’t matter. Even the fittest among us can get this disease.
#6 – Demonstrate that ME/CFS can happen to ANYONE.
Maybe someone thinks this disease is just the accumulation of insults that you, a couch potato par excellence, somehow foisted upon yourself? If so, tell them about what happened to Jamison Hill – bodybuilder.
Jamison Hill was a bodybuilder and athletic trainer before he suddenly, in the midst of a workout, became dizzy, experienced chills and intense heart palpitations – and came down with ME/CFS. Prior to ME/CFS, he spent over 1,500 hours a year working out.
At his worst after ME/CFS, he couldn’t leave his bedroom. Five years later, he’s still homebound with no end to the disease in sight. He’s just one of many former athletes to get it.
#7 – Demonstrate that even gentle exercise can be too much.
OK – your friend says, pounding weights at the gym is out. How about just going for a walk every day. Surely you can do that!
Good try! Some people with ME/CFS can, in fact, go for short walks (and do). Unfortunately, even light exercise like walking is too much for most of us. One study that asked people with ME/CFS to walk 15-25 minutes a day found that instead of getting better, their symptoms worsened. One reason for this is that walking takes more energy than usual in ME/CFS. One study found that walking, presumably because of ME/CFS patients’ reduced ability to utilize oxygen, placed far more of a physiological burden on people with ME/CFS compared to healthy controls.
#7 – Inform them that even normal daily activities are often too much.
All right, all right, all right – your hubby says. Going on walks isn’t going to do it, but you’re lying in bed most of the time! Surely you can get up and do stuff around the house (????).
If only he knew how much you’d love to do housework. How much you’d LOVE to be able to scrub the kitchen floor again!
One study found that the more activity people with ME/CFS engaged in, the more symptomatic they became. Exercise physiologists have found that the aerobic energy production system can be so broken in this disease that even sitting up can be too much.
Even normal activities are often too much. The reason is that ME/CFS is not an exercise disorder, it’s an exertion disorder.
#8 – Emphasize that exercise is just the tip of the iceberg: ME/CFS is really an “exertion” disorder.
Explain that ME/CFS is an exertion disease. In fact, problems with simply exerting oneself, whether physically or mentally, are often so dramatic that a federal report suggested that ME/CFS be called Systemic Exertional Intolerance Disorder (SEID).
If only ME/CFS was an exercise disorder. It’s much worse than that. ME/CFS is actually an exertion disorder – which leaves many people effectively running on empty.
New Term – Symptom flares occurring after too much exertion are so bad that a new term – post-exertional malaise (PEM) – was introduced into the medical lexicon to characterize it. PEM is the hallmark symptom of ME/CFS; if normal physical or mental exertion does not cause your symptoms to increase – you don’t have hME/CFS: it’s as simple as that.
Tell him/her studies indicate that too much exertion produces symptoms like exhaustion, brain fog, sleep disturbances, headaches, muscle pain, flu-like symptoms (e.g. nausea, irritable bowel), dizziness, anxiety, depression, and sensory overload. In the worse off, too much exertion can produce a symptom flare that lasts weeks or even months.
If they still can’t believe how bad it can get direct them to Mark Vink’s story. Mark is a doctor with ME/CFS who can now hardly make it to the bathroom on his own.
#9 – Besides, tell them (politely) that you’d really rather listen to the voices of experience …
Weeks or months? How about years? If they’re still bugging you and you’re not home or bedbound now, you might tell them that about 25% of people with ME/CFS are… and they got that way somehow. The number one response to an informal survey asking people with ME/CFS what they would have done differently, was that they would have paced themselves earlier in the illness. Several thought their lack of pacing set them up for a devastating decline.
#10 – Tell them what can work and how you would LOVE to get some support with that.
All is not lost. Careful pacing using one’s heart rate or a heart rate variability monitor can help improve fitness, reducing pain and fatigue to some extent.
At this point your friend may be flustered by all this bad news. Tell them there is one thing that appears to help about 75% of people with ME/CFS. It’s called pacing.
One study found that staying within one’s energy envelope or pacing – staying at a level of activity which does not cause symptoms – allowed many people with ME/CFS to do a bit more with fewer symptoms. Short-term attempts at “pushing through” resulted in crashes (pain and suffering) and less activity overall, while pacing and remaining within one’s energyenvelope allowed people with ME/CFS to do more with less pain and fatigue.
Pacing is not a cure, but it can help, and there is an approach to exercise that does work. A heart-rate based exercise protocol which includes pacing and avoids the anaerobic energy production system can help you keep as fit as possible without sending your system into a flare.
Physical therapy – done correctly – can help too. Some patients find that exercises like yoga and QiGong, which keep one limber and emphasize breathing and calming techniques, are beneficial.
- Check out how physical therapists are getting it about ME/CFS
Maybe they could even check out an excellent video on how to maximize one’s (limited) energy resources
How to Do More With Less
Check out exercise physiologist Staci Stevens’s video presentation “How to do more with less” on some appropriate ways to improve fitness in ME/CFS.
Wow! Just wow! Great, succinct article. So timely for me.
EXCELLENT article for family if they’d only read it. Drs. as well but again, IF ONLY!
I would encourage those who are able is to try & Swim & also walk as much as the can & rest in between. Swimming is also used in Ehlers Danlos Syndrome which I believe is actually CFS all along especially
the hypermobility type & some can have ‘crossover’ EDS with multiple types so it is important that all have the Genetic EDS Panel done as EDS3 hypermobility does not yet have a blood test marker. I have seen
Vascular EDS called ‘VEDS’Vascular Ehlers Danlos Syndrome with EDS3 combined. Swimming & a Sauna is good but always at your Pace & rest, float in between. If you are able to swim you will notice over time
things will get better but do not overdo this you will crash & get discouraged. Also test yourself for the Alpha Gal Meat Allergy blood test & then if Positive have an Allergist check you for countless foods
on skin testing from even chicken beef pork & milk, some can be Allergic to milk as well & not know this it can also cause inflammation as well & congestion, mucus etc. If you decide to do any Running go to
a quarter mile track run & walk as you go & see if you can build up but remember if you do too much you will pay for this day after so go slow & gradually build up. I would start with a pool or the Ocean first what you want is motion exercise movements.
Well, CFS and Fukuda were always a mess because it never defined the disease of ME or now what can be diagnosed as ME/CFS or SEID.
EDS may very well be CFS because CFS was never what the viral outbreak at Incline Village was, even though Fukuda and CFS were developed due to Incline Village. They got it wrong from the start and with Fukuda and CFS swept in every fatiguing illness out there which ended up causing great damage to the patients suffering from their own unique disease.
https://cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
CDC AND NIH Officials Discussed “Desirable Outcome” of Seeing A Distinct Illness “Evaporate”.
(CFS Report Op/Ed, March 2014) — Craig Maupin
In recent months, efforts to redefine chronic fatigue syndrome (CFS) have come under much scrutiny. The attention on the new definition should come as no surprise. Definitions and labels can be abused to direct research and clinical outcomes toward personal beliefs of authors. In the case of CFS, it has been easy, and perhaps necessary, for the DHHS to dismiss such past problems as unfounded speculation.
The truth is far more complex. In a document obtained by the CFS Report (see links below), Stephen E. Straus, widely known as the creator of the “fatigue syndrome” concept, discussed his hopes for 1994 redefinition of CFS with the CDC’s Keiji Fukuda. The Straus/Fukuda letter, written after the submission of the new definition for publication, is frank. Straus predicts the new definition would cause “the notion of a discrete fatigue illness” to “evaporate”. Once a concept of a distinct disease evaporates, Straus claims a framework of idiopathic fatigue — a symptom that falls short of a distinct disease — would be left behind. Straus predicts the new definition may lead to the “entire abandonment” of CFS. It is a strange prediction, to champion a definition that leads to the future abandonment, evaporation, and discreditation of that which one claims to want to define.
This is poor advice. I’ve had cfs for 30 years. Yes you can feel better for a few months with exercise. However your body will eventually crash and can take a year to recover. The negative effect it btt as outweighs the positive
That totally negates the entire article…
The article starts off saying that people with ME/CFS must do everything they can to “maintain their fitness” – that’s the kind of harmful myth I used to believe. I was easily doing 10 mile weekend runs when I started with mild M.E. and trying to “maintain” that hastened my decline – I thought resting on the days before and after would allow some fitness to stay. Trying to “maintain” walking hastened the path to a wheelchair – which I now struggle to self-propel.
Maintaining my fitness – or trying to – took me from mild to severe and I still have not improved from that.
Those of us who appear to have a progressive course – about 25% with the illness – physically CANNOT maintain their fitness.
The focus on “vigorous exercise” is misplaced when for some people trivial daily living tasks have the impact of vigorous exercise.
I suggest you re-read Mark Vink’s excellent study from 2015 – on himself and also described on Phoenix Rising. Few people without severe ME/CFS would recognize that walking to the bathroom every 12 hrs is vigorous exercise for him – and raises his lactic acid threshold beyond that that most professional athletes would quit. Vink is former captain of the Dutch national hockey team and a doctor. He only became severe after being told to keep exercising.
Please rephrase this so it applies to those with severe and very severe ME – and stop assuming when you write that all of us can walk.
I would have loved to share this article – but I simply can’t with statements about making “every effort” or “maintaining fitness” in it. “Every effort” conflicts with Envelope theory and even Spoon theory.
Thanks for pointing that out. That sentence didn’t seem right to me either. I rephrased it to say “While doing what you can within the parameters of your illness to maintain your fitness is a good thing in any disease, vigorous or even light exercise almost always has negative effects. The article never said “must” do what they can, by the way.
The parts of the article which refer to vigorous exercise do so because they refer to research studies which employed vigorous submaximal or maximal exercise tests. The word vigorous was used in the interests of accuracy. It was certainly not meant to suggest that anyone with ME/CFS engage in vigorous exercise!
I have the feeling you quit reading the article in disgust (:)) but if you read on would find that later parts of the article note how disabled people with ME/CFS can get and that even small amounts of exertion – not exercise – can produce PEM- including for some people not being able to sit up without getting into anaerobic energy production.
I know Mark Vink’s story – I wrote about it – How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study – https://www.healthrising.org/blog/2015/09/25/walking-marathon-me-cfs-case-study/
Thanks for mentioning Mark Vink’s story – I added to the article as an example of how bad things can get – to a doctor of all people.
Thanks Cort – that really helps! I wasn’t expecting you to edit but much appreciated!
I read the whole article, and your coverage of Mark Vink’s study, but didn’t have the focus for the video.
Maik Speedy (also a doctor) wrote an interesting letter I think to a psychsomatic journal echoing Vink’s experience of decline after GET but explaining the twisted logical used when CBT is presented as a “cure” for the illness.
Something interesting from Vink’s study that I haven’t seen highlighted was about the affect of digesting food on recovery and lactic acid dispersal. He found trivial exercise much slower to recover from and much greater when he had recently eaten rather than on a fairly empty stomach – presumably since the effort of digestion reduced what was available for muscle recovery. I suspect that’s relevant for milder cases too.
Thanks again for the article and your edit
How about the ocean with a rip tide? That ought to do it!
11)Say that the easiest way to distinguish between burn-out and ME/CFS is to look how a patient responds to exercise:
a) exercise causes improvement: likely burn-out
b) exercise causes deterioration: likely ME/CFS
Gentle exercise in water has been a lifesaver for me.
Glad to hear it. No stress on the joints, very gentle medium to be in – it sounds like an excellent way to go if you have access to a pool and are well enough to use it. Thanks for passing that on.
I used to swim 32 lengths of the pool, 3 times a wee before I got ill and I absolutely love the feel of the water. But since having ME for the past 18 years I usually feel ok in the pool for about 5=7 minutes of gentle swimming but then the pain begins in my arms, legs and shoulders which I guess is lactic acid build up.
Usually I then lie on my back and just gently kick for about another 5 minutes before I realise I am going to suffer if I don’t get out.
It is then that the real problems start which I think is linked to POTS. Usually the changing rooms are hot, I have used up most of my energy so my heart rate goes right up and I can feel weak and dizzy and panicky.
So I don’t swim anymore unless there is a recliner near the pool that I can lie down on and recover before getting changed. This works fine as I usually eat a little to replenish my blood sugar and also have a drink with some salt water in it.
The result is that I now only swim if I am staying somewhere suitable as its just hopeless for me to go to a local pool and I really miss that feel of lying back in the water or just swimming which before illness always felt so normal to me.
Notable that not a single ME/CFS researcher looked into Julies story about recovery by mold avoidance.
https://www.washingtonpost.com/national/health-science/what-is-chronic-fatigue-syndrome-and-why-arent-we-doing-more-to-treat-the-illness/2014/10/06/4cfff312-d458-11e3-8a78-8fe50322a72c_story.html?utm_term=.cfd8ff03c3cd
Wish you’d stop using the word “prove” in most headlines. Immediately makes the non-believers/skeptics back go up, defensive, roll their eyes. WORDS MATTER.
Good lord I know words matter…Speaking of which you stated that I use the word “prove” in most headlines. I went through the past 40 blogs or so and I found the word prove in two of them.
Anyway, I’m open to using a different word – what would you suggest?
In fibromyalgia it is critical that the illness is not viewed as central sensitization (pain amplification). Pain is one of the cardinal symptoms but not the only one. Muscle stiffness and tendon rigidity are as important, if not more important because this symptom is measurable and is a clear sign that metabolic problems exist in the muscle tissue. Taking it further we know (and can see) that mitochondrial dysfunction occurs which results in lower energy availability in many cells and consequently oxidative stress is compounding the effects.
Similarly in ME, fatigue is one of the cardinal symptoms. Think about the other cardinal symptoms in ME.
Don’t get symptom bound when thinking about the illness.
Besides Overwhelming post-exertional malaise, there is:
sleep disturbance (measurable), concentration and memory impairment (measurable), sensory hypersensitivities, chemical/drug hypersensitivities, recurrent almost (cyclical) flu-like symptoms, poor/slower healing from injury and infection.
This is what your primary physicians do. They think in simple terms. Fibromyalgia = pain sensitivity. ME/CFS = fatigue. They do not keep up with the research. People who do keep up with the research can see that these illnesses are clearly a physiological disorder involving some very low-level biochemistry.
It is now known that fibromyalgia involves “inflammation”, including neuro-inflammation and microglial activation. Only a year ago even some researchers were saying “there is no inflammation”. They were wearing the wrong glasses! measuring the wrong (elementary) indicators.
Like another poster said “words matter” – they also define perspective. I have told several GPs that their perspective is biased. I told those same GPs that their perspective on vitamin D was biased and narrow. Their beleif was that too much vitamin D would cause hypercalcemia. It does, in rare cases and with very high supplement doses. They needed to get up to date and see that 4000iu daily is actually a moderate dose. The research tells us that a dose of 4000iu will raise the blood levels of vitamin D only moderately and in most people a dose of 10,000iu is safe. Their bias came from a very limited knowledge of vitamin D ie. vitamin D is needed for calcium absorption. Again “wrong glassess”!
Any doctor who tells a person with ME or with fibromyalgia that exercise is the best answer is biased and has not done their homework – so should NOT be giving an “opinion” on the illness at all.
That’s the most sensible reply I’ve read. I’ve had fibro for 11 years but only been diagnosed last year. The initial onset and impact was sudden and life changing. The lack of support and knowledge of fibro made it difficult to prove to doctors that it wasn’t all ‘just in my head’..docs words! I was always active and ate sensibly. I’m allergic to penicillin/spores/mushrooms and avoid anything related. I’m going to research the lactic acid thing… I frequently do lymph massage to help alleviate flare ups and swelling.
I found this a very helpful article – although there do seem to be two #7 points – are they an a) and b) or is it really two points, so making it 11 points?!
On a related matter, I found Dr Vink’s situation very inspiring, and I don’t get inspired by much these days. It made me wonder about other athletic folk with ME/CFS and their stories… I know of two, Peter Marshall, former World No.2 Squash player, wrote an autobiography ‘Shattered’, very useful and shows how little progress has been made in the last couple of decades until the last year or two it seems; and Tyler Wright, an Australian surfer who went public just in November.
I was no elite athlete, but I was a fit chap, running, swimming (2-3x/week each), metafit (HIIT) 1x/week, before a parasite infection and non-recovery and a descent into barely being able to walk for 6 mins without severe PEM and lactic acidosis would cripple me. I can do more now, but not daily, very slowly walking. I use the HRM and 60% MHR as my guide, but it’s so hard when you know what you used to be able to do, and everyone saying ‘you don’t look sick’. Anyhow, for those of us who used to be fit the re-learning is so hard and so many of the FB support groups are so dominated by negative experience, mostly women (not surprising given the incidence rates) and some of the men’s ones are just vulgar at times, that it’s hard to know where to go for encouragement and insight on how to re-calibrate – GET and CBT under King’s College Hospital are not helping me at the moment.
One way is explain CFS/SEID as a chronic overtraining syndrome. You are not going to tell an overtrained ahlete to exercise, as the only remedy for OTS is rest. Here is a snipet from the nyt article https://www.nytimes.com/2008/03/02/sports/playmagazine/02play-physed.html
..is, instead, a recognized illness (known formally as “overtraining syndrome” by the growing cadre of doctors and researchers who study it), similar in many physiological and psychological respects to chronic-fatigue syndrome..
That said, I wouldn’t discourage people from walking if they can manage. Slow walk rarely left me worse off and often helps to lift my mood. Just today I was struggling from the after-effect of a short bike ride 2 days ago. I went out for a coffee anyway and my mood was was up 2 notches in my scale of 1-9 by the time I returned. I’m a mild-to-moderate case tho, so caveat emptor.
I completely agree with you about gentle walking lifting ones mood. I find that just being in the park around nature helps me to feel better as long as I am in a fit state before I start. If I haven’t rested enough then my body is sending out so many unpleasant signals that all I can think of is how I get back to the car without being completely dizzy and unable to move.
Thankfully that doesn’t happen too often as on the whole I am careful to pace but do get it wrong some times.
My experience of gentle walking for about 15 minutes and then a sit-down for 5 enables me to carry on for a maximum of another 10 minutes without getting PEM. I will feel drained at the end and need to rest and have something like peanut butter to top up my blood sugar but my mood will be hugely better.
I have had times recently when I haven’t been able to walk very well and have had to cut back to a maximum of 15 minutes in all but there aren’t many days when I don’t at least try.
Yeah, that sounds about right. I walk about half a mile, rest and then come back. When I’m struggling, I cut it back by half.
The general (outdated) common “opinion” about ME and FM is that “graded” exercise will improve the illness (Meaning that the patient will gradually improve their function and feel less pain or less fatigue. From my experience with many people is that this is true very rarely. I know people who have had ME and FM for over 15 years and they have sincerely applied this outdated view. After 15 + years most of these patients tolerate the same undulating symptoms. They have adjusted their lifestyle with pacing, avoidance (environmental management)and dietary management. Many with ups and downs and many many personal experiments with supplements, medications and “psychological” aids such as meditation and various other neuro-plasticity training. Some convinced themselves that this or that regime worked for them BUT and it is a sad and cynical “but” that most of these “believers” were not much better than they were 15 or so years ago except for their tolerance of their symptoms. For that, they deserve better than “go exercise”. For many doctors with ME and FM patients I hear “Most do well on SSRIs or SNRIs or amitriptyline/nortriptyline” – “the drug of choice”: (“It is a form of depression really”). Depression responds to exercise so therefore ME and FM will/should respond given persistence.
These attitudes/opinions (because that is what they are – not evidence based medicine) are well ingrained and they are taking a lot of shifting.
One thing I learned from watching Staci Steven’s video was that we actually damage our immune system by overdoing the exercise. I have never thought of it in those terms and wonder if that’s why I seem to get so many viral type flare ups especially in winter.
There are very few days when I don’t have at least a short walk and I know that frequently I am left feeling very depleted at the end of the walk.
However it doesn’t explain why this only seems to happen in winter. However I will definitely take note of this and be stricter with myself and cut back a little on some of my walks.
From walking in the cold or draft I get near instant a flare up of the common cold and ear infection. That happens far more clear in winter but even on a mild summer day with “cold” wind when (electric) bicycling.
Wearing a hat is not preferred above wearing ear-warmers if weather is none too cold (I use a large closed music headphone to avoid ridicule). Both help with the ear infections thing but the hat makes my head more confused. I do better having not to warm on the head.
For the susceptibility to cold, I use warm clothing on the chest and neck (scarf). Also check indoor air humidity. It can be very low in winter. That irritates airways and reduces mucus protection. If so, use a air humidifier but ONLY a type that has special functionality to reduce spreading bacteria.
I also benefit from a medicine made of viral particles, called Bronchovaxom in Europe. It works for some really well and not for others in reducing susceptibility to the common cold.
When I have even a quarter of a cold I get increase in other vulnerabilities on the side.
When feeling depleted after exercise, it is in my experience likely too much and deteriorating your health. When feeling very depleted…
Glad to hear you have a medicine that can help you through the winter. I don’t know if Bronchovaxom is available for a UK GP to prescribe. I will follow this up as I seem to spend a good part of every winter with some sort of virus.
The bullet points suggest we “tell them” or “inform them” — but the (few) people who ever ask me, sometimes rather bluntly, what’s wrong . . . they do not want to be told, or informed.
They have no patience. And they “know” that, because of their own personal experience, that exercise works really well.
Is there some meaningful suggestion regarding how to get those already-convinced people to make an effort to understand someone else’s very different experience?
I’m very glad to hear that there is a way to actually know you’re functioning outside one’s own “energy envelope”! The trial and error strategy didn’t work well for me. I was exhausted several times a day but didn’t always experience PEM. I DID document everything I did daily, including the time of day. So, when PEM hit (like a freight train) I would look backwards in my notes for something extra I’d done that might be what had pushed me over the limit. Curiously, I found that extra bit of activity occurred around 36 hours before the sudden onset of what can only be viewed as the savage assault that is called “PEM”.
My method didn’t work. Pretty much everybody in the forum has probably read that I’m mostly bedridden. But it’s currently worsening. I had enjoyed a year without increase in severity and frequency of symptoms. It is directly tied to attempted activities forced on me by an uneducated medical system. When a ME/CFS patient says they can’t stand for more than a few minutes it needs to be taken literally. I’m attempting to remain in home with a caregiver 38 hours a week. I know no one will take “mom” in if it’s that or a mursing home. It’s on my mind a lot lately.
Re the target heartrate idea of monitoring I wonder if there is a set of variables to allow individuals with different heart rates a way of knowing what their target should be? I’ve had tachycardia my life. I take medication for it. It is still considered a tachycardia heart rate even with the medication but it’s lowered enough to not make me symptomatic during daily life. In other words I can still inhale because my heart isn’t doing 147 BPM from standing for even two or three minutes. It’s down to a steady 120! so I’m not even sure if a targeted heart rate would apply in my case? It sure is it really good idea though and hopefully it will be applicable to everybody.
Hi Cort – thanks for this – would be nice to get your reference list for all of the studies that you cite here. I’m a little concerned about the messaging. No one should feel that they have to exercise. No one should feel that they should exercise. I agree that the health and physical activity zealots get carried away with guilting people into exercise. At the same time, no one should feel that they can’t exercise or shouldn’t exercise. The benefits of physical activity that go beyond physical health and everyone is capable of doing something if they choose to, and enjoy the benefits. Look forward to that list of references. Kind regards P
If you click on the links they should take you to the studies 🙂
Thanks Cort – but Hmmm I’ve clicked through on those first few studies and as they say – the devil is in the detail. Handgripping to fatigue may not be everybody’s idea of a physical activity recommendation for someone with CFS!
I just went back to the gym yesterday for the first time in about eight years. I used the weight machines on very light. It felt great to exercise this way again after so long. I was a fitness trainer many years ago when I developed CFS, then stopped exercising and seeing clients. Fortunately mine is relatively mild and I’ve been able to carry on with fairly normal activities in spite of the fatigue, severe headaches, and flu like symptoms. I stopped formal exercises but remain fairly active otherwise. I’ve made very good progress with the fatigue aspect since beginning homeopathic therapy a couple years ago. So, I thought I could handle some strength exercises,which I could really use since I’ve lost a lot of lean tissue. But, I guess not. Today I have the sick type headache and throat swelling common of my flair up. Fortunately the fatigue didn’t flair as well.
I’ve been involved with alternative healthcare for almost twenty years, and have studied like crazy trying to understand and overcome this crazy illness. It still blows me away that I can be pretty active with minor repercussions but some very simple light weight exercises can cause all these flairup symptoms right off again after all this time.
I appreciate this article. Helps me have a broader perspective of the issue.
How about calling it what it is, ME. At this point, we have a more crucial matter at hand.
1- HOW many of us would like to improve our lives by 30% at least? Do you have any idea cort?
2- How many of us want to go directly to healing remedy that may very well be in a distant future, and the process of FDA approval long and painful. not to mention political. insurance companies, big pharma, academy (look what happened to Dr.MONTOYA (wait for 20 yrs to bump him out when on the height of his success – those in academia especially research know what I am talking about. Competition is fierce. I have experience in big and small pharma, as well as academia.
Everyone!