Onset associated with Exercise ?

[panckage]

The M.E doctor I saw 24yrs ago told me I had atypical M.E and advised I do absolutely nothing, even when I felt recovered. Too bad I didn't liisten.

Exertion can lead to crashes that can last weeks/months/etc but is there any research that says this can permanently worsen ME?

 

[Mij]

@panckage I didn't have PEM for the first 6years of illness. I developed PEM when I started exercising, I've never gone back to when I felt much improved years ago.. I even developed OI after taking immune modulators that gave me a major relapse. I'm feeling better in some ways, but worse in others. I stay within my energy envelope now to avoid PEM. It's better to be safe than sorry.


I don't know if there's research that proves this, but many members on this board have experienced worsening just like me.

 

[Keela Too]

Exertion can lead to crashes that can last weeks/months/etc but is there any research that says this can permanently worsen ME?

I don't know about research... but I have had a couple of instances where a single over exertion event seems to have permanently lowered my level. Also a flu did that too last summer.

Of course I'm only 3 1/2 years ill, so can't say if "permanent" but certainly long-term.

 

[alex3619]

I will, of course, let you all know 'when' it cures me.

I tried two different styles of Tai Chi in the early 90s. I got worse from both of them, and also chi gung. So I stopped doing them.

 

[alex3619]

Exertion can lead to crashes that can last weeks/months/etc but is there any research that says this can permanently worsen ME?

Permanent? Maybe in some cases. Long term is entirely possible though.

In my case muscle pain from exercise took 15 years to start to die down, and was always present even when not exercising. However that was after a year of physiotherapy that aggravated things. Even now, another 10 or so years on, I still have susceptibility to muscle pain in some of those muscles, but it tends to be activity related. Such pain is not PEM though.

On the other hand my general energy has declined, badly, after every severe infection and every time I move house. I have yet to recover from my last house move, and that was 10 years ago.

 

[Forbin]

Perhaps ME develops due to an unusually strong immune response to an infection. Ironically, you may only be able to mount such a strong immune response if your immune system is relatively healthy to begin with. People who train and are in excellent physical condition may just be more likely to have strong immune systems, either because the training produces a stronger immune system or the people with strong immune systems are more likely train (because they are not otherwise in bad health). Anyway, if this were true, you might be somewhat more likely to get ME if your were in good health previously.

This is somewhat like the theory that younger people were more likely to die in the Great Influenza of 1918 because their healthy immune systems responded so strongly that the massive reaction actually contributed to their deaths.

Just speculation...

 

[alex3619]

Over exercise induces a cytokine shift. I do not recall all the details. I investigated this about fifteen years ago. In fact, one of the main books on this, at the time, was written by my cousin, who is an exercise physiologist. Unfortunately I have lost touch with that side of the family.

Talk of stronger or weaker immune systems is probably inappropriate. It might be better to talk of dysregulation of the immune system. Talk of overactive or underactive immune systems might be appropriate in some circumstances though. This was summed up here:

This is somewhat like the theory that younger people were more likely to die in the Great Influenza of 1918 because their healthy immune systems responded so strongly that the massive reaction actually contributed to their deaths.

The latest NCNED study tracked changes in NK cells over time, and showed that the NK cell problems shift as severity increases. I was expecting a thread on this, and if its not up soon I will post one, but I have not read the full paper yet and have been less well than usual.

The NCNED study also showed changes in gamma delta T cells, something I have been expecting. These cells migrate, and if they migrate to the gut to curb LPS responses then fewer are available to induce healing and regulate the immune response elsewhere. However I am not familiar with the specific gamma delta T cell response they discuss. See http://www.translational-medicine.com/content/pdf/s12967-015-0653-3.pdf

 

[TiredSam]

Perhaps ME develops due to an unusually strong immune response to an infection. Ironically, you may only be able to mount such a strong immune response if your immune system is relatively healthy to begin with. People who train and are in excellent physical condition may just be more likely to have strong immune systems, either because the training produces a stronger immune system or the people with strong immune systems are more likely train (because they are not otherwise in bad health). Anyway, if this were true, you might be somewhat more likely to get ME if your were in good health previously.

This is somewhat like the theory that younger people were more likely to die in the Great Influenza of 1918 because their healthy immune systems responded so strongly that the massive reaction actually contributed to their deaths.

Just speculation...

I was very fit and healthy before ME. In my first 10 years in Germany I only took one day off work for sickness. Even after that I hardly ever got ill (colds etc) and if I did, I bounced back quickly. I put it down to being self-employed, seeming to have a strong immune system, and having always taken care of eating properly and staying fit with exercise. So I fit the pattern described above.

 

[pogoman]

I used to work out and exercise but had to stop a few years ago because of body pain and exhaustion within hours.
I still have an active job, I have found besides the usual methylation supplements that taking the amino acids L-citrullene, L-aspartic acid and BCAA's help very much.
I take them before, during and after work or hard activity, they reduce the pain and fatigue that comes afterwards.
It was so bad I went back on nortriptyline for awhile but have been able to stop it now.

I am not diagnosed with either ME or CFS but have an unknown myopathy from raised CPK and muscle biopsy.
I am awaiting a blood test result ordered by my neurologist, doing research on it I found a whole different type of autoimmune muscle diseases that are noninflammatory and actually get worse with exercise and nontreatment.

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=206569

I bring this up because there are many here undiagnosed with muscle pain, weakness and fatigue and this is a new category of muscle disease that is only starting to be researched in depth.

 

[Chrisb]

What I would like to know of every visitor to this thread is, at precisely what point do you believe that your exercise aversion started, and what do you think brought it about? I am sure we would all welcome the opportunity of discussing this in detail with Trudie Chalder to enable her to explain to us just where we went wrong.

 

[ukxmrv]

Exertion can lead to crashes that can last weeks/months/etc but is there any research that says this can permanently worsen ME?

I don't know if the reactions experienced by ME patients who undertook (as an example) the early Graded Exercise Programs of the 1990's ever translated into research because the people selling these programs largely controlled the research being carried out.

However, I experienced a permanent change to my physical functioning after one of these courses. Patients were encouraged to slowly increase their physical activity REGARDLESS of their symptoms. Activity was increased every week or monthly slowly but patients were given these increase to do even if they were getting sicker over time.

Patient surveys in the UK seem to be one of the few places that patients can report GET harms

"According to the seminal work on ME of Dr. Melvin Ramsay, "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis."

It has been demonstrated that graded exercise was either of little or no use to the majority of patients, and that the use graded exercise on the severely affected was indeed harmful. In a British study, 1,214 of 2,338 patients had tried graded exercise. Of these, 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse. This was the highest negative rating of any of the pharmacological or non-pharmacological interventions covered in the questionnaire (and may explain the high drop out rates found in some of these programs)."

http://www.ahmf.org/infosheet.htm

 

[Keela Too]

In reply to @Chrisb

If exercise is like spending:
Then the ability to exert oneself, is related to income.
ME is then like having your income suddenly slashed, through no fault of your own.
Exertion over the new energy limit is just like spending on credit.
And PEM is when the loan sharks start circling with their inflated interest rates - that get higher the more you need to use them.

So if a person developed an aversion to spending above their income in these circumstances, they would be applauded!

In that case, why is a reasonable aversion to exercise for ME patients not held up in the same esteem?

Would anyone write papers suggesting that it is only a "fear of spending" that prevents those on low incomes from splashing out more.

Mind boggles!

 

[JaimeS]

"This is somewhat like the theory that younger people were more likely to die in the Great Influenza of 1918 because their healthy immune systems responded so strongly that the massive reaction actually contributed to their deaths."

I have always wondered about our narrow 'window' of age of onset. I know there are some teens with ME and some people well into middle-age who develop it; but that doesn't seem to be the median, and my understanding is that onset at these ages is rarer. Of course, it can be difficult, too, for people who have a more gradual onset than the 'hit by lightning' subset. Still, what magical thing happens in the late 20s to mid-30s that means so many of us are noticeably struck down at this age? I have wondered...

It could be as simple as that's when most people are at work full-time and exposed to numerous pathogens (as a teacher, I certainly was.)

-J

 

[Mij]

I had a very strong immune system, never got the flu or a cold. Was athletic and had energy to give away.

After the sudden viral onset I was still functional and was able to continue working and going to school. When I was vaccinated shortly after is when my energy levels started to diminish slowly. I could still run etc but I never got that "high" after a work out. I felt flat. I didn't understand it.

 

[kxcountry]

To answer Chrisb: I had an immediate aversion overnight which was originally thought to be from viral sinusitis.

I believe in marathon runners, from my own research many years ago, there were some studies and articles relating Eosinophiles and NK cell increases, and a change in B and T cell ratios in marathon runners during training, plus pre and post marathon.

Google "Duel in the Sun" and look at the google books page. Read from pages 68-71, and tell me Alberto Salazar doesn't sound like the typical ME/CFS patient. From what I have read, he has recovered somewhat via time and some typical ME/CFS drugs.

As for me, I was a 29 year old ex-Special Operations medic, marathon runner, and first year medical student when I had a bout of viral sinusitis. When the above person (me) becomes unable to run a 100 meters overnight, that's a problem, and I tried to relay this story about Salazar from my first hospital visit and every subsequent trip. 11 days after the sinusitis I have a few doctors and many professors that can relate I suspected the same thing happening to me, and I have ton of notes and data to back this up.

I never trust anyone that just puts up a new profile, and doesn't give their background, so take all this with a grain of salt until I get a profile picture and documentation. Like I told my patients, the internet is more than porn and cat videos, do your own googling and make your own conclusions. I've been seen by one of the top ME/CFS doctors in the states, and have been suffering for 3 years and 9 months. This being the internet, and with this disease in general, I will live and die by my slogan "never trust anyone".

 

[JaimeS]

Well, @kxcountry , we hope to see more of you.

I tend to check the number of messages someone has posted as well. That said, once you've been here awhile, you'll see that we are a relatively friendly bunch, especially for the interwebs. We tend to be skeptical as a group, due to experience, but generally kind to each other, and open to any new ideas that are cited by a study that is performed well.

Welcome!

-J

 

[Pyr2]

Yes. Absolutely for me. I had a bad case of mono as a teen. Would get weird flares of symptoms in times of stress. Those were probably minor reactivations. The biggie came in my early 40's when I was training for a bodybuilding competition. My ebv reactivated. And the rest is history. I can still exercise now, but I am slower and not as responsive and tire more easily. If I push myself I get PEM, but my PEM is mainly neuro symptoms. I don't have PEM fatigue, though or any other time. That part still really puzzles me.

 

[Chrisb]

Welcome to the forum @kxcountry .I am sure your experience will be very useful here.

I regret that it was rather remiss of me to put up my post and potentially hijack this thread. I am sure your post in response is entirely in keeping with the original intent of the thread and is very informative.

Your experiences in the US will probably not have exposed you to the absurd notion held by some psychiatrists and therapists, particularly in the UK, that symptoms in this condition are perpetuated by false or abnormal illness beliefs exemplified by an aversion to exercise. The cure is supposedly cognitive behaviour therapy and graded exercise therapy overseen by therapists of doubtful qualification. You will often encounter references to Professor Simon Wessely and Professor Peter White who are the main protagonists of this belief along with therapist Professor Trudie Chalder.

It seems that no evidence of cases which suggest the ludicrous nature of this general theory is capable of persuading them to the contrary.

What I was trying to do was point out the absurdity of the idea that previously healthy people, desperate to return to their previous levels of activity, might be affected by psychogenic exercise aversion. I have seen no suggestion that the "Wessely school" as they are known are eager to speak anyone who might falsify their beliefs

Welcome to the club. Now I had better return this thread to BurnA with apologies for my intervention

 

[SOC]

I wonder if some people who attribute the origin of their ME to exercise have simply experienced their first bout of PEM. I suspect that the root cause of ME may be more subtle and that many of us have ME before the excess situation that throws us into PEM the first time. Many of us have noticed that we don't return to our previous baseline after a bad case of PEM. It is easy to think that the first time we notice severe symptoms and don't get back to normal is The Beginning, but it could just as easily be the result of some other cause.

Most of the initiating events we report are also PEM triggers, possibly because they can have a significant effect on the the immune system -- infections, vaccines, exercise, other stressors. There has to be a reason our bodies react differently to these common events than those of other people, and that reason may not be event itself.

 

[TiredSam]

I wonder if some people who attribute the origin of their ME to exercise have simply experienced their first bout of PEM. I suspect that the root cause of ME may be more subtle and that many of us have ME before the excess situation that throws us into PEM the first time. Many of us have noticed that we don't return to our previous baseline after a bad case of PEM. It is easy to think that the first time we notice severe symptoms and don't get back to normal is The Beginning, but it could just as easily be the result of some other cause.

Most of the initiating events we report are also PEM triggers, possibly because they can have a significant effect on the the immune system -- infections, vaccines, exercise, other stressors. There has to be a reason our bodies react differently to these common events than those of other people, and that reason may not be event itself.

Sounds very likely to me. I can remember to the day the onset of my first crash, which is when I say my "ME started", but looking back there had been a few strange goings on before that, including stabbing pains in the kidney area a few months before with no explanation, which also stopped after a few weeks rest and started again as soon as I felt better and did sport. This was about 3 months before my first crash with fatigue, headache, nausea etc.

Also in retrospect I think I had one episode of PEM 3 years before my ME start date. I cycled 1500 km in 17 days with a broken wrist, and on the morning of the last day I had what I now think was a mini-crash, which I pushed through to finish the trip. For the next three years that became my "most tired I've ever been" story, and nothing like it happened again for the next 3 years. So maybe ME has been dormant in my body for many years, but the amount of exertion required to provoke a crash was so high until recently that I didn't notice anything until 5 years ago following a ridiculous amount of exertion, and then 2 years ago much more regularly as the amount of exertion required to make me crash fell into the everyday activities area.

All speculation of course.