Putrino worked with his patients to come up with this protocol
Our last blog covered a study showing that intense exercise messes with the mitochondria, inhibits energy production, and can even produce muscle damage in some people with long COVID.
Is all exercise necessarily bad, though? ME/CFS experts, and now David Putrino in long COVID, have produced gentler exercise programs that, when done correctly, can help some patients.
In a recent National Public Radio piece, “A discovery in the muscles of long COVID patients may explain exercise troubles“, David Putrino of the Mt. Sinai Center stated, “Physical exertion does harm to the bodies of people with these illnesses.” His general guidance is to avoid exercise, practice “energy conservation, and engage in “autonomic rehabilitation”.
Putrino quickly glommed onto the long-COVID problem and began trying new things early in the pandemic, one of which he called “autonomic rehabilitation”. Far from avoiding exercise, his approach embraces it, albeit slowly, while using breathwork to reset an unbalanced autonomic nervous system so that it can respond more normally to challenges. (Putrino believes the ANS in long COVID is over-responding to any challenge.) Putrino actively worked with patients to create the protocol. The aerobic parts of his approach – which comes later in the program – are based on a modified (toned-down) exercise protocol for postural orthopedic tachycardia (POTS) produced by Robert Levine.
The Study
In a 2021 preprint, “Autonomic conditioning therapy reduces fatigue and improves global impression of change in individuals with post-acute COVID-19 syndrome“, Putrino and colleagues reported on their study findings.
Study Assessments
The following symptom assessments were used:
- Fatigue visual analogue scale (VAS),
- Medical Research Council (MRC) Breathlessness Scale,
- EuroQol health-related quality of life (EQ-5D-5L),
- Pain VAS,
- General Anxiety Disorder-7 (GAD-7),
- WHO Disability Assessment Schedule (WHODAS),
- Patient Global Impression of Change (PGIC).
David Putrino’s Autonomic Rehabilitation Program
Phase IA – The Setup
The first phase typically takes 4-6 weeks.
Recovery Breathwork
Putrino very early recognized that the breathing was off in long COVID. A 2021 Atlantic magazine article reported:
“Evidence began to accrue that long-COVID patients were breathing shallowly through their mouths and into their upper chest. By contrast, a proper breath happens in the nose and goes deep into the diaphragm; it stimulates the vagus nerve along the way, helping regulate heart rate and the nervous system. Many of us breathe through our mouths, slightly compromising our respiration, but in patients with post-acute COVID syndrome, lung inflammation or another trigger appeared to have profoundly affected the process. In these cases, patients’ breathing “is just completely off,” stated Dayna McCarthy of Putrino’s Mt. Sinai Center.”
Putrino began to use a program called “Stasis” to recover normal breathing patterns and in some patients, it helped. (Stasis provides different programs (Basic, Advanced breather, Master breather from free to $10/month) and breathwork coaching for those who desire it. Health Rising is not affiliated with Stasis in any way) The Atlantic article reported on it:
The program, which “involves inhaling and exhaling through your nose in prescribed counts in the morning (inhaling for 4 counts and exhaling for 6) and at night (inhaling for 4 counts, holding for 4 counts, and exhaling for 4 counts” was developed by Josh Duntz, a Navy Special Operations veteran, and his co-founder, Dan Valdo.
The idea was that a breathing program could help with the hypocapnia, or low CO2, levels found in long COVID (as well as ME/CFS) brought on by rapid, shallow breathing. Regulating the breathing can also reduce the stress response and enhance the immune response.
Putrino reported that everyone in the pilot program reported improvements in shortness of breath and fatigue. Breathwork didn’t cure anyone but it did “take the edge off their symptoms”. He felt that breathwork helped get patients to a “place where the healing can start.” Note that ME/CFS exercise physiologist Staci Stevens of the Workwell Foundation also starts her patients off with breathing exercises.
The recovery breathwork in this study included 4-second inhalation/6-second exhalation nasal breathing during the rest breaks between each exercise set. Each rest break was less than 5 minutes.
Patients could progress to the next phase of the ACT for PACS program if they could tolerate the program for a week. Patients with greater than a 3-point change in their pain (using the VAS scale), who required greater than 5 minutes between exercise sessions to rest, or who simply wanted to stop the program, stopped at this point.
Even though the autonomic nervous system results, and symptoms, and the post-exertional malaise found in long COVID and ME/CFS are identical, Putrino never mentions ME/CFS in the paper. Only Gullain-Barre Syndrome, and post-viral autonomic dysfunction syndromes (post-viral orthostatic hypotension, postural orthostatic tachycardia syndrome POTS) are noted.
THE GIST
- The last blog featured a study showing that intense exercise whacked the mitochondria and even caused muscle damage in many people with long COVID.
- In an NPR article, David Putrino bemoaned the doctors who tell long COVID patients to hit the gym and noted that he’d created an autonomic rehabilitation program that was able to reduce fatigue.
- Putrino’s autonomic rehabilitation is a breathwork/gradual exercise program, but it’s a very gradual program that seeks to slowly rehabilitate the ability of the autonomic nervous system to respond to challenges.
- Putrino early on found evidence of hypocapnia (low CO2 levels) in his long COVID patients. (Low CO2 levels have also been found in ME/CFS) and can produce many symptoms. He has been using breathwork practices produced by a company called Stasis in his protocol. (The protocol is described in detail in the blog. Among other things Stasis provides breathwork coaching.)
- Putrino starts his program with breathwork and range of motion exercises in an attempt to reset the autonomic nervous system, stimulate the vagus nerve, tone down the stress response, rebalance the immune system, provide mobility, and ultimately help prepare the ANS for exercise. (See the blog for details)
- A study on his ACT exercise program for long COVID indicated that the program was not a game-changer, but it did improve fatigue (from very fatigued to moderately fatigued) and produced a slight but noticeable change in overall health for those who completed it (about 40% of the original group). Other aspects (breathlessness, pain, quality of life, anxiety, disability) were not impacted.
- In the video interview, Putrino said some people did recover and it took about 100 days on the program for that to happen.
- Most of the participants (60%), however, did not complete the program and we don’t know why. Levine’s exercise-based protocols for POTS – which this study was partially based on – can be quite successful for some, and have high dropout rates as well. While Putrino’s program is less taxing than Levine’s, a large Levine POTS study had a 70% dropout rate.
- Putrino is not the only practitioner to try to get his patients to a better place before they attempt any exercise. Peter Rowe uses bodywork and stretching. Staci Stevens and Todd Davenport of Workwell use breathwork and stretching, and David Systroms wants to see progress on Mestinon before he starts to prescribe exercise. (These are discussed in the blog).
Supine Exercises
- supine exercises that simply increase range of motion are done while a patient is lying down,
- active range of motion open chain knee flexion heel slides,
- active range of motion open chain hip abduction,
- active range of motion concentric quadriceps activation via straight leg raise, concentric closed chain hip extension bridges.
Each exercise was performed over a 30-second interval. Patients performed exercises at their own, self-selected speed and repetition (to meet standardized RPE metrics). They were encouraged to perform each exercise at a rate of perceived exertion of 2/10 (very light exertion) on a modified Borg scale. The exertion is so light that Putrino said he had to convince some formerly healthy long COVID patients that it was worth doing.
Phase II – Isometric Exercises
After 4-6 weeks comes seated or upright isometric exercises:
- seated hip adduction ball squeeze,
- seated active range of motion hip flexion marches,
- seated concentric quadriceps long arc quadriceps (LAQ),
- side-lying hip abduction clamshells,
- modified (high kneeling) plank,
- the patients also continued with straight leg raises and bridges from phase IA.
Exercises were performed at an intensity of 2 sets of 10 repetitions each. For the plank exercise, patients completed 2 sets of 10-second holds.
The same stop protocol for Phase I applied to Phase II.
In Phase IIA and IIB – submaximal aerobic exercise. Heart rate, pulse oximetry, and chief complaint VAS were established at the start of the session.
Phase IIA
Four stages – each lasting one week. Patients go from performing 5 repetitions at 1-minute intervals in week 1, up to 5 repetitions of 90-second intervals in week 4.
The goal is to complete 6 minutes of total aerobic training time without symptom exacerbation and be able to complete a 6-minute walk test (6MWT) at the end of week 4.
Phase IIB
Starting with 3 repetitions at 2-minute intervals in week 1, participants work up to 6 repetitions at 2-minute intervals in week 4.
The goal is to be able to complete 12 minutes total aerobic training time and set the participants up for a submaximal exercise test to begin Phase III.
Note that participants move to the next stage only if they can tolerate the present stage.
Phase III – the Modified Levine Protocol
Only at phase Phase III does Putrino employ a modified (toned down) Levine protocol which includes a 3-month long progressive and graded aerobic exercise training program. Patients only progress when they can tolerate the exertion without exacerbating their symptoms.
Using an established age-predicted heart rate maximum (75% of it) – a base rate of perceived exertion of (13-16 Borg scale), a “maximum steady state” (16-18 Borg scale), and a “recovery pace” (6-12 Borg scale) are established.
First, patients complete three sessions per week on a recumbent bike using the base and recovery pace for approximately 25-30 minutes per session. As the patients proceed, maximum steady-state intervals are introduced. Baseline, midpoint, and end-of-session heart rate, pulse oximetry, and chief complaint visual analog scale (VAS) data are collected.
Patients are encouraged to continue aerobic training, consistent with the guidelines of the Levine protocol, beyond discharge from therapy to maximize gains, maintain symptom stability, and promote exercise tolerance and the benefits of aerobic training.
Results
Of the 78 people who consented to be in the trial, 40% completed it. Unfortunately, the reasons 60% of participants discontinued the program were not clear. The authors cited problems with administrative follow-up and/or referral to physical therapy, or the patients’ own choice as reasons.
As noted earlier, the study used 7 symptom assessments:
- Fatigue visual analogue scale (VAS),
- Medical Research Council (MRC) Breathlessness Scale,
- EuroQol health-related quality of life (EQ-5D-5L),
- Pain VAS,
- General Anxiety Disorder-7 (GAD-7),
- WHO Disability Assessment Schedule (WHODAS),
- Patient Global Impression of Change (PGIC).
Of those, the Fatigue Visual Analogue Scale (VAS) and the Patient Global Impression of Change assessments showed improvement.
Fatigue – The participants started off with a mean score of 51 (very fatigued, significant difficulty with daily activities) and ended with a mean score of 36 (moderately fatigued, some difficulty with daily activities).
Plus, the long-COVID controls who did not participate in the ACT exercise study did not progress and remained “very fatigued”. Overall, the people in the ACT exercise study judged they were less fatigued after taking the program (p<.03) than at the start of the program.
Global Impression of Change – The Patient Global Impression of Change (PGIC) (how much improvement occurred over the program) was increased in the ACT exercise group (p<.01) relative to the patient group who did not participate in the program. The median score of 5 in the exercise group (a slight but noticeable change) was a bit better than the mean score of 4 (somewhat better but no real difference made) in the control, non-exercising group, but nothing to write home about.
Putrino reported that the ACT for PACS program has been implemented across 53 physical therapy centers in the greater New York area and that he’s trained 700 doctors in its use.
Conclusion
Putrino’s autonomic rehabilitation is a breathwork/gradual exercise program, but it’s a very gradual program that seeks to slowly rehabilitate the ability of the autonomic nervous system to respond to challenges. Putrino starts his program with breathwork and range of motion exercises in an attempt to reset the autonomic nervous system, stimulate the vagus nerve, tone down the stress response, rebalance the immune system, provide mobility, and ultimately help prepare the ANS for exercise.
The ACT exercise program for long COVID was not a game-changer, but for those able to get through, it helped. It worked to improve fatigue (from very fatigued to moderately fatigued) and produced a slight but noticeable change in overall health for those who completed it (about 40% of the original group). In the video interview, Putrino said some people did recover and it took about 100 days on the program for that to happen. Other aspects (breathlessness, pain, quality of life, anxiety, disability) were not impacted.
Most of the participants (60%), however, did not complete the program and we don’t know why. Levine’s exercise-based protocols for POTS – which this study was partially based on – can be quite successful for some, and have high dropout rates as well. While Putrino’s program is less taxing than Levine’s a large Levine POTS study, for instance, had a 70% dropout rate.
Other Approaches
Other approaches to exercise in ME/CFS exist.
Putrino is not alone in his belief that work needs to be done to prepare long-COVID/ME/CFS patients for exercise. Staci Stevens starts off her heart-rate-based exercise system with breathwork, Todd Davenport uses breathwork and stretching, Peter Rowe uses stretching and bodywork, and David Systrom uses Mestinon to set the stage for exercise.
Mestinon (Pyridostigmine bromide)
Systrom only employs exercise in his patients after they’ve improved using Mestinon (or perhaps other treatments).
A quickie Mestinon study – the drug was given in between two exercise tests – suggested Mestinon may indeed help some patients exercise. Peak VO2 – the maximum amount of energy produced at a point during the exercise test – decreased in the patients given the placebo but increased in the patients given Mestinon.
Mestinon also stopped the after-exercise energy drain; i.e. the increased oxygen consumption (peak resting VO2) that showed up during the resting period in the patients who didn’t get the drug. In fact, instead of increasing their oxygen consumption, the people receiving Mestinon significantly decreased their peak oxygen consumption during the rest period.
A placebo-controlled, blinded study of Mestinon by itself and in combination with low-dose naltrexone (LDN) is underway in ME/CFS.
Check out one story of a longtime ME/CFS patient who was able to exercise after using Mestinon.
Stretching and Bodywork
Peter Rowe and Workwell (Staci Stevens, Todd Davenport) have found that stretching and/or bodywork can help their patients tolerate and improve with exercise.
Rowe – who has found that people with ME/CFS exhibit areas of “neuromuscular strain” that impede their range of motion and cause pain and fatigue, stated that “manual forms of physical therapy have been quite helpful for improving overall function, especially when people had not done well with exercise-based therapies alone. In those cases, the exercise ended up being “too much, too soon.”
After the areas of restricted movement have been treated, people find that they can tolerate gradual increases in exercise without as much post-exertional worsening of symptoms. This then allows them to obtain some of the expected benefits of regular exercise. To my surprise, I have found that stretching in combination with exercise band exercises works! It’s probably all anaerobic yet I feel a stronger and more resilient as a result of it. It’s one of the few things I can say that has helped my ME/CFS/FM.
Similarly, Davenport combines stretching exercises with deep diaphragmatic breathing exercises in order to increase oxygenation and energy availability. When the patient’s system has rehabilitated a little bit, he adds very short-term, low-load, strengthening exercises.
Heart Rate-Based Approaches
Putrino employs a heart rate-based approach in the later stages of his protocol. In an attempt to avoid stressing the aerobic energy production system -some ME/CFS experts do as well.
Staci Stevens and Workwell use cardiopulmonary exercise tests to identify heart rates which should not be exceeded to avoid taxing a broken aerobic energy system. They recommend that exercises, in general, last less than two minutes.
One patient who followed Staci Stevens’ activity and exercise program religiously used a heart rate monitor to ensure that she operated in her anaerobic “safe-zone”. She did diaphragmatic breathing, upper body flexibility stretches, and resistance and short-term endurance exercises three times a week.
A follow-up a year later indicated that not only had she stopped her activity regression, but she had been able to increase her activity levels without causing ill effects. Even though she had only been engaging in anaerobic activity, her CPET tests revealed significant improvements in virtually every category ((Peak VO2 (26.1 ml/kg/min), ventilation (90 L/min), respiratory rate (54 breaths/min), heart rate (189 beats/min), and systolic blood pressure (170/98)).
- Coming up – a new anaerobic exercise approach from Germany
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Nobody who knows these diseases thinks exercise is the way out – quite the contrary. Some ME/CFS experts have found that “exercise”, properly done, can be helpful for some people.
It’s not a game-changer but we’re not at the game-changer stage yet. We’re at the “anything that can move the needle a bit” stage and that’s what this blog is about. If you’re interested in finding ways to “move the needle” in even small amounts please support us in a way that works for you.
Thank you for this write-up, Cort.
Just wanted to quickly share your way, since time sensitive. This week, the US. Senate announced a hearing next to address Long COVID. It is scheduled for Jan. 18th and will be live-streamed.
The HELP Committee is holding the hearing and is titled “Addressing Long COVID: Advancing Research and Improving Patient Care”.
Link below, and wanted to make sure you saw, and so you could share to the community. From what has been shared by the staff of my Senator on the HELP Committee (Tina Smith, D-MN), patient advocacy has been vital for raising the alarm to them and having this hearing be scheduled.
https://www.help.senate.gov/hearings/addressing-long-covid-advancing-research-and-improving-patient-care
Cort, thank you for this timely post. After reading the NPR article, this was exactly the information I wanted.
🙂
Is there a reason why so much about PEM is being talked about in ME/CFS and now long COVID but not for fibro? I found a couple of studies on it and it seems to exist in fibro too but is much less well studied there. However, it seems to be the same to me as it is for ME/CFS the difference is that standard guidance still recommends exercise for people with fibro but not ME/CFS. I think though anyone with fibro knows the same tenets apply, stretching, breathwork, ANS and vagus nerve reset exercises, and that trying to do aerobic exercise can be impossible and debilitating, causing much more pain and fatigue. After all, in a disease where so much is going on in muscles why have fewer exercise studies been done? Just scratching my head, hoping a lot of this research translates but maybe there is some key difference I am missing between PEM observations in ME/CFS and what is known in fibro. Any thoughts would be great!
I can’t understand why they’re still recommending exercise for fibromyalgia either, since approx 50% of fibro patients fit the bill for ME/CFS, supposedly. Seems dangerous to me. Didn’t do me any good. I’m 90% bedridden now!
I followed the Stasis regimen back in 2021, when it was free. It worked wonders in ameliorating my breathing problems after getting COVID. I keep getting recurrences of post-COVID breathing problems, and breathwork helps each time. In other times, I try to do breathing exercises daily (although I go through lazy periods), because it’s my sense that it does calm my autonomic nervous system. In fact, I wonder whether my earlier, limited progress from meditation was actually due to the deep, nasal breathing, rather than being due to mindfulness.
In Table 1 of the study, it seems to be saying that quite a few of the participants had cancer. Am I reading this correctly?
Wouldn’t having a serious disease such as cancer in addition to long COVID make a difference to people’s responses to an exercise program?
Very strange indeed. Also, a large proportion in both groups seems to have had asthma.
I also feel I am benefitting, though very very slowly, from regular stretching and very gentle therapy band resistance exercises, and manual lymph massage and ‘rolling’ my muscles out, all on the floor due to POTS. I also do a sort of isometric ‘squeeze/hold’ and stretching of various muscle groups while in bed.
I have to be very careful not to overdo it, as it all really feels good; I watch my heart rate. I cant do it every day and I have to take breaks but I think its helping.
Perhaps I should do a more formal type program, but I feel best when I listen to my body and symptoms for guidance on my activity levels, not follow a regimen regardless of how my body reacts to it. I will have to check out these new protocols though, I am willing to try anything that may help.
Anectdotely, for me, I have found that muscle strengthening and awareness to how my muscles work in consert during everyday chores helps. Muscles and nerves coordinate better – less work needed is my explanation. Proprioception stuff really. So. I’m for example try to remember to not use my hands when I raise from sitting down, stand while putting on my pants, standing short periods on one foot etc. So you cannot call it exercise really, but it slowly build strength to be able to ie vacuum clean, fold clean clothes after washing and drying etc.
My belief is that by coordinate muscles by awareness and gradually build strength you actually use less energy in the long run doing all the other things you need to do. It is frustratingly slow. Last time I was at my lowest was autumn 2020, and I’m still at a level that I’m outside my appartment one to three times a week. Then it was once/twice so, but the difference is that I do not get as fatigued by it. And overall feel better in many aspects. Even if what I can do haven’t changed that much to someone assessing it.
Are you familiar with the Feldenkrais method? (Also sometimes referred to as “awareness through movement”.) You are describing its core tenets to a T. There a many free recourse at Feldenkraisaccess.com (Feldenkrais Access), (and no doubt other places), should you have any interest. I worked my way through all of their free lessons, and am now doing some of their paid lessons. It has been immensely helpful for pain, but it is also, just as you describe, about your nervous system learning how to move the most efficiently. So while I haven’t seen it spoken of directly in relation to fatiguing conditions, the whole idea is to reduce (and refine) the effort it takes to move, so I should think it could be very applicable. (It is also generally calming for the ANS.) It is often used by people who have had complex neurological damage (strokes, etc.), recover function.
My take on “is all exercise bad?” is: As long as done within the available energy envelope (!!) and without PEM, moving your body and stretching your body is good because it keeps the fascial system fluid, “keep juices flowing” so to say, and help – like yoga – calm down the nervous system.
Keeping the fascial system (connective tissue) fluid/flexible is the most important aspect of that to me. As far as I remember from a documentation on fascia, these fibers literally start form a sticky mesh if not moved regularly. Here’s an Arte documentation on fasciae with English subtitles which I’ve linked before: https://www.youtube.com/watch?v=Owd3_JrAseo . Here’s also an article on fasciae https://www.hopkinsmedicine.org/health/wellness-and-prevention/muscle-pain-it-may-actually-be-your-fascia and a somewhat blatant picture 🙂 https://bendablebody.com/wp-content/uploads/2020/07/Fascia-Image-1-1024×627.jpg
If I can, I try to do a few stretches every night plus massage my feet and leg both with my fingers and an actual rolling pin, it greatly relieves tension in my legs before bed. If I can, I try to briskly walk some meters back and forth in the living room or on the terrace, also rotating my arms for stretching/moving the whole body.
I seldom can anymore, but if so, a short set of yoga sun salutations, going for a hort walk while sometimes swinging my arms, or back when I still could slowly swimming for a short time in warm water all got the body gently moving. All these forms of moving the body, in particular yoga, not only get the fascial system moving, but move whole muscle chains in the body, and naturally incorporate elements of strenghtening at the same time.
Strength exercises though I do not tolerate well (will lead to cramping muscles/nerves immediately) and do not find beneficial to me. (Used to do weightlifting at a gym, and – with gradual onset of ME/CFS – could literally observe how physiology changed over time and I tolerated it less and less).
Re. connective tissue, might mention that I don’t think I have any hypermobilities, rather the opposite maybe.
Can anyone direct me to a resistance band exercise program? I currently do a stretching program but would like to try an exercise program. Thanks!
You might find yin yoga both helpful and more do-able, if you are not already familiar with it. It targets the connective tissue directly, and is done in completely passive poses. (No strength required.) It has been so helpful to me. I have the congealed connective tissue you describe, from a combination of connective tissue autoimmunity and lack of proper (hydrating/healing) blood flow, due to POTS.
Thank you for suggesting this. Would you happen to have a link e.g. for an online course you did? And tissue autoimmunity sounds interesting too – how did you have this diagnosed (are there maybe specific lab parameters for this?) Thanks again and good to hear you have something helpful! 🙂
Hi JR,
Most of the yin yoga I’ve done is through my membership at https://www.gaia.com/ It is a pretty “out there” site, in general, but I just ignore most of it and use it for its extensive yoga library. (Once a member you can search by practice type and find all of the yin classes by many different instructors. I like it for its variety.)
One of the most informative instructors, Bernie Clark, also has his own site https://yinyoga.com/ and weekly classes. https://yinyoga.com/online_classes/
I’d feel good about supporting him, and it might be a good way to feel a bit a part of a community. (Though probably not with much interaction.) I might try it out, myself.
You could get a little taste of his style/perspective by checking out his YouTube channel: https://m.youtube.com/user/yinsights1
I’m sure there are other good resources out there, those are just the ones I have used, or been interested in.
As for the autoimmunity, I have consistently high AnA’s (anti-nuclear antibodies) and very high anti-histone antibodies, both of which are part of standard panels done looking for connective tissue autoantibodies; looking for lupus, rheumatoid arthritis, scleroderma, etc. (I say “standard” because they are, or should be, but it took 18 years for anyone to think to run them on me.) Those, combined with my symptoms, qualify me for “undifferentiated connective disease”. (I have also had markers for antiphospholipid syndrome come up, which is a lesser-run test, and which some use to further support a diagnosis of connective tissue autoimmune disease.)
https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp#:~:text=The%20term%20%22undifferentiated%20connective%20tissue,a%20diagnosis%20of%20a%20defined
I have very tight/inflamed/painful connective tissue (I am most suspicious that I have “scleroderma sine sclerosis”). https://www.hopkinsmedicine.org/health/conditions-and-diseases/scleroderma/types-of-scleroderma
But, interestingly, I am also hyper-mobile. So I have to be very careful not to over-do stretching (like yin yoga). I have had the best luck stretching and strengthening in unison, but have only remotely had the energy/strength/health to do that by supporting my system overall, and particularly by getting my POTS more under control.
That’s the quick download. I hope that is of some help! Something in there, anyway. Best of luck to you!!
Oh, and yes, lots and lots of self massage. (Like your rolling pin technique.) I have found that heat (like an Epsom salt bath, or a heating pad if you don’t tolerate baths), followed by self-massage, and then yin yoga, is the most effective sequence, for me. Getting things heated up and the blood flowing, then the yin stretches. (So you’re not doing them “cold”.)
Hi MarthaLauren,
thank you so much for taking the time to write this! 🙂 I am sure your links will be helpful getting an insight into what yin yoga is, and maybe getting further diagnostics done!
I once did a Yengar Yoga class which is also nice because it works with lots of blocks and belts to help along inflexible bodies!
I can confirm self-massage is a good thing – I do it on my feet and legs! 🙂
What medical speciality would you say is in charge of connective tissue autoimmunity – would that be a rheumatologist?
Best of luck to you, too!
Ooh, thank you, I will be sure to look up Yengar Yoga. Always interested in modalities that take stiff reality into account! Yes, rheumatology is generally your best bet for having tests for connective tissue autoimmunity run, though for me it was a naturopath who specializes in EDS and hypermobility who thought to look for those things, so there are may be other ways “in”, too…Best wishes for increased flexibility. 🙂
I noticed that my breathing problems come ‘part’ from the diaphragm. There are periods when the slightest effort, such as squatting down, then getting up stops my breathing. When my fasciotherapist manages to unblock the diaphragm (by working on the vagus nerve and the diaphragm) I breathe much better. I no longer have this feeling of lack of oxygen. She showed me stretches to do with my arms to ‘open’ the diaphragm. Now I’m going to look at diaphragmatic breathing.
Thanks for this blog Cort.
And I agree with JR, the facial system is very important.
For the moment, I have not found anything better than fasciatherapy, osteoarthritis and physiotherapy to relieve some of my symptoms
I think it’s poorly translated.
The sentence was; For the moment, I have not found anything better than fasciatherapy, osteopathy and physiotherapy to relieve some of my symptoms.
Two comments: 1) I’m not surprised to see that part of the explanation for the high dropout rate of this study at Mt. Sinai is “administrative.” I tried volunteering for their RECOVER study about a year and a half ago, and the communication and follow through were such a mess that I got turned off. I live an hour away from MS; I could not risk getting all the way into NYC only for them to tell me “oops – we messed up – you’re not on the schedule today.”
2) I think what’s missing here re: dropout rate is the realization that Mount Sinai is in one of the largest cities in the world. Even if study participants live within the city, it is still an extraordinary hassle for even healthy people to travel within the city, starting with the decrepit subway station with scant or broken-down elevators. Participants probably arrived on site already exhausted.
Question: In “The Gist,” bullets 4 and 5, you reference “the blog” for more information. What blog are you talking about? Do you have a link?
It’s the blog the GIST is posted in.
symptoms below sounds like us. Hoe about supplementing Acethylcholine to balance the nervous system?
Symptoms of Acetylcholine deficiency.
From:https://vagusnervesupport.com/top-ten-symptoms-low-acetylcholine/
“1. “Brain Fog”, Poor Short-Term Memory:
Acetylcholine is the neurotransmitter needed by the neurons of the brain to communicate with each other. Low acetylcholine causes difficulties with cognition, “brain fog”, and mental fatigue.
2. Fatigue, Especially Fatigue That Worsens With Exertion:
Acetylcholine is required by the peripheral nervous system allowing muscles to work. Insufficient acetylcholine levels result in muscle weakness that worsens with exercise or exertion. The muscles may work for a while, then exhaust their supply of acetylcholine, leading to extreme fatigue.
3. Constipation / Gastroparesis (“can’t poop”):
The vagus nerve uses acetylcholine to assist every aspect of digestion including peristalsis (movement of food or stool through the digestive tract). Stomach acid production, the opening of the pyloric sphincter at the bottom of the stomach, gallbladder function, some pancreatic function, and opening of the Sphincter of Oddi (which allows bile and pancreatic enzymes to pass into the intestines). Therefore, low acetylcholine levels are especially detrimental to the digestive tract.
Because the vagus nerve is such an important part of the digestive tract low acetylcholine levels can be especially detrimental. Chronic constipation and/or gastroparesis. are very common symptoms of low acetylcholine.
Poor digestion and poor absorption of critical nutrients are also common symptoms of low acetylcholine potentially leading to malnutrition.
4. Dry Eyes (“dry as a bone”):
Normal tear production is a process of our autonomic nervous system. Acetylcholine is required by the lacrimal gland to produce tears. Acetylcholine is also used by the nerves to tell our bodies when to produce tears. When levels of acetylcholine are low, dry, painful eyes can result. Dry eyes due to insufficient acetylcholine are resistant to conventional dry eye treatment unless acetylcholine levels are restored.
5. Orthostatic Hypotension:
Suboptimal acetylcholine levels can cause low blood pressure when standing, causing dizziness and weakness.
6. Flushing (“red as a beet”):
Patients with low acetylcholine often experience episodes of flushing (redness) on the face. The neck and other parts of the body may also appear flushed. It is common for flushing to be misdiagnosed as rosacea or mast cell activation.
7. Emotional Instability (“mad as a hatter”):
People with low acetylcholine levels often suffer from the inability to cope with their emotions. Their emotional state can be unpredictable.
8. Chronic Inflammation:
Acetylcholine is needed by the vagus nerve (the anti-inflammatory pathway of the body). Low levels of acetylcholine contribute to consistently high inflammation which can cause pain, atherosclerosis, fatigue, hypercoagulation (easy blood clotting), and premature aging. Chronic inflammation is an often overlooked symptom of low acetylcholine which results in accelerated aging.
9. Fast Heart Rate (Tachycardia):
The parasympathetic nervous system is the body’s “rest and digest” system. When levels of acetylcholine are insufficient, the vagus nerve no longer slows down the heart. If the heart can not be properly slowed the body cannot rest. The vagus nerve relies upon acetylcholine to stimulate the sinoatrial node of the heart to normalize the heart rate.
10. Large Pupils (“blind as a bat”):
Pupil size is a function of the balance between the sympathetic nervous system (large pupils) and parasympathetic nervous system (small pupils). Suboptimal acetylcholine levels upset this balance. When the balance is upset, the sympathetic nervous system overrides the parasympathetic nervous system, resulting in large pupils. Large pupils often cause light sensitivity and difficulty focusing.
If you have some of these symptoms and yet you have not been poisoned, you could be dealing with less than optimal levels of acetylcholine, perhaps due to genetics, aging, or inflammation.”
Good thought. Mestinon, the drug mentioned under “other approaches” in this blog, works to make Acetylcholine more available for nerve function. (It is the main neurotransmitter used by the vagus nerve.) I just Googled “supplementation for Acetylcholine” and lots comes up, from dietary sources (foods high in choline) to supplements. Thanks for the thought!
It sounded like from your article, Cort, that the Stasis program had free or low-cost options, so I went to check it out. Today (Jan 2024) from Canada I downloaded their app and was offered a 3 day free trial, automatically billed for a year’s membership. I was only offered the premium option of $120/year, billed all at once (not monthly), at a “special promotional discount” of $80/year on the 3rd day of membership. So if you, fellow Health Rising reader, are interested, just be aware that the free option won’t take you very far and that there is a big up-front cost.
Thanks Andrea – I thought there was a $5 a month option. Darn!
DO YOU HAVE APROVIDER IN THE HARTFORD, NE REGION IN CT? I HAVE ALL OF THE ABOVE AND YET THERE IS NO PROVIDER WHO RECOMMENDS ANY MEDICATION OR ANSWERS. MY MUSCLES GO INTO A PARALYZING SPASM/CRAMP WHICH CAUSES ME TO SCREAM OUT IN EXCRUCIATING PAIN AND SOMEONE NEAR ME HAS TO SLOWLY MANIPULATE THE AREA TO STRENGTHEN OUT MY LIMBS.
Not from the UK but: With muscle spams so extreme, what you could do is look for a neuroimmunologist (or neuroimmunological specialist clinic) who can run panels of neuroimmunological tests. They could exclude a couple of other conditions which could cause painful cramps (as far as I’ve heard, e.g. Myasthenia gravis, stiff man syndrome, multiple sclerosis….which are all autoimmune conditions). Unless it’s very clear your condition is say clearly post-Covid – but even then, a few cases pf post-Covid onset of other autoimmune conditions (such as the abovementioned and others like diabetes) have been published. I think a neuroimmunologist might be your best bet. In Germany though, I think I had to convince a neurologist first to get neuroimmunological clinic referral.
In my personal (German) experience, what often works to get a referral is expressing the wish to “exclude” known neuroimmunological conditions that cause such symptoms and can sometimes be treatable, instead of mentioning “ME/CFS”. Even when someone’s convinced its “psychosomatic” (like many neurologists still tend to be in Germany), they can still be open to the argument of “excluding” other conditions. If it’s the same in UK that GP cannot directly refer for neuroimmunological testing and you need a neurologist first, you might look for a neurologist whose webpage mentions neuroimmunological knowledge, or on doctor rating webpages check comments which neurologists are mentioned to be “thorough” and give you the impression they’d take your symptoms seriously.
Exercise gave me painful muscle cramps/pain upon reaching energy limits (sometimes as fast as after 5 min slow swimming) in the earlier phases of ME/CFS, but what you describe sounds a bit different to me.
Best wishes!
Too bad that no one reported that there is a senate hearing on Long Covid and ME/CFS happening right now.
If you were on the Solve ME list you could be listening live.
“A team of researchers led by Onur Boyman, professor of immunology at the University of Zurich (UZH) and Director of the Department of Immunology at the University Hospital Zurich (USZ), has shown in a study that the complement system plays an important role in long COVID.
It is part of the innate immune system and normally helps to fight infections and eliminate damaged and infected body cells. “In patients with long COVID, the complement system no longer returns to its basal state, but remains activated and, thus, also damages healthy body cells,” says Boyman.”
https://medicalxpress.com/news/2024-01-complement-cell-covid.html
Nice! Thanks, Ann!
Cort and Ann,
Here is the link to the publication https://www.science.org/doi/10.1126/science.adg7942
This is great stuff, Cort. I haven’t seen such a comprehensive rehab protocol with so many elements we are pretty sure help (from both research and patient/practitioner) experience. Breath work, pacing by HR, starting with anaerobic exercise, ie stretching, very gradual peogesss, halt progress if symptoms worsen, etc. From my perspective where I live in Canada there aren’t any rehab professionals who understand ME/CFS so I’m always having to make my own modifications which often means doing no physical exercise although I think I’m at the stage where I would benefit from a slow and structured program like this. I already have lots of exercises in a folder from PTs and restorative yoga DVDs as resources.
And I think we could all individualize it to suit our situation and interests. For example I would continue my meditation/mindfulness practice given its abundance of evidence in ME/CFS and slight improvement in my condition but I can understand why it wasn’t included in the protocol despite good evidence for its help in ME/CFS – you can only do so much in one study.
I think for me this is a good starting point and I can always modify depending on my own results and any further research that comes down the pipe. What Dan Neuffer said in his interview comes to mind, and I’m paraphrasing – add a missing piece but don’t forget to keep on doing what has been working for you.
I also have a question about Mestonin – is it available in Canada?
I have had really good luck recently using an under-desk cycle to help circulate my blood as I sit, or recline, or even as I lie flat on the floor. (I started lying down completely and pedaling, and worked my way to more upright positions over many weeks.) So far I have left the machine on the lowest setting – almost zero resistance – figuring that just “free-spinning” would help the muscle pump of my legs contribute to my circulation (I have POTS), without pulling any more blood to my legs for actual “exercise/effort”.
I actually find it very soothing to do, and have now many times heard and felt my digestive system “turn on” as I am pedaling. I assume the increased blood flow to my brain allows my ANS to shift out of sympathetic (make adrenaline to stimulate blood vessel constriction) mode, into parasympathetic (rest and digest) mode.
The “DeskCycle 2” is the one I use, and can be used while lying completely flat on the floor, if anyone else is interested in experimenting. It is also very small and light, which is convenient for storage. I also now have the ellipse by the same brand (DeskCycle Ellipse), for under my desk. I have found that having my feet/legs in constant gentle motion is allowing me to do things I have not been able to do comfortably (without ending up in migraine, for instance) for decades.
Putrino likely doesn’t mention ME/CFS in his paper because he’s stated (on Twitter) he no longer diagnoses patients with ME/CFS, even if they meet the diagnostic criteria. He lumps those patients under the Long COVID banner without an ME/CFS subgroup.
He received some pushback on this stance but has firmly defended it; as he doesn’t personally like the diagnosis, and apparently neither do his patients, who refuse to accept it.
The fact that this very gentle exercise study had a 60% drop out rate is telling as to his patient cohort’s symptoms.
I’ve been following Putrino’s Autonomic Rehabilitation Program for a few weeks now, and I have to say, I’m seeing some real progress. My fatigue has definitely improved, and I’m able to do more activities without feeling completely exhausted. I’m also noticing that my brain fog has cleared up quite a bit, which has been a huge improvement for me. I’m definitely convinced that this program is worth trying for anyone struggling with long COVID. It’s been a game-changer for me, and I hope it can be for others as well.
Great to hear – and thanks for sharing that. Continued good luck!
This is great, do you have any update on this?