A couple of weeks ago Health Rising posted a kind of wakeup call for the COVID-19 long haulers. Borne out of decades of experience with ME/CFS, it was admittedly a pretty harsh piece – not easy to take in.
Now for a more hopeful piece. During this tough time for the long haulers it might help to know that over time the ME/CFS community has produced many resources and insights that may help. On their side, people with ME/CFS might surprised at just how much is available as well. I was.
The Early Window
The bad news is that you’re having trouble recovering from COVID-19. The good news is that studies suggest you have the best chance of recovering from a post-infectious illness in the first two years. They also suggest that most people with lingering symptoms do recover over time.
Studies suggest that the first two years provide a window of opportunity for the long haulers.
If studies of other post-infectious illnesses hold true with COVID-19, a smaller, but not insignificant, percentage of people (perhaps 5-15%) will have a very long recovery period, and in some cases, will not fully recover. In the past, people who have failed to recover from infectious events have usually been diagnosed with chronic fatigue syndrome (aka ME/CFS aka M.E. (myalgic encephalomyelitis)).
The limited research into post-infectious illnesses suggests that, whatever the initial symptoms, post-infectious illness states over time usually resolve to an ME/CFS-like illness characterized by fatigue, exertion-induced flares or relapses (post-exertional malaise or PEM), pain, sleep and cognitive problems; as well, sometimes there are digestive issues, problems standing, sensitivities to chemicals, odors and other stimuli.
As the SARS-CoV-2 coronavirus is new to the scene, we don’t know if the same pattern will prevail. Some people with COVID-19 have trouble recovering, but do not have ME/CFS-like symptoms, while others do. It will take time and studies to tease out what’s happening. Indeed, the COVID-19 pandemic has had one salutary outcome – for the first time, people with post-infectious illnesses are being accounted for and are starting to be studied. Those studies, however, will take time.
The Research Situation
With the exception of chronic fatigue syndrome (ME/CFS, M.E.), post-infectious illness states – which occur when someone remains ill after a pathogen has apparently been vanquished – have received very little attention in medical research. The studies that have been done outside of ME/CFS have mostly served to document that these problems exist. Since the clinical studies in ME/CFS are rare, tend to be small, and usually focus on long-duration patients, they may not provide a lot of help either.
COVID-19 long haulers might be heartened to know, though, that the NIH started a small but incredibly in-depth study of early post-infectious onset ME/CFS patients; i.e. people who were in your situation a couple of years ago after infection with a different pathogen. That study is now informing a similar study underway on the COVID-19 long haulers.
Avindra Nath is applying the insights he’s learned from ME/CFS patients to a long-hauler study.
Open Medicine Foundation (OMF)-funded ME/CFS researchers are also doing complete molecular analyses of long haulers. Both of these studies bring an in-depth knowledge of the post-infectious state to the table.
Unfortunately, the National Institutes of Health (NIH) has not yet embraced the long-hauler issue and more studies are needed to provide insights into what’s happening with you and so many people with ME/CFS.
Other encouraging news includes the post COVID-19 treatment centers that have opened up and the many tracking projects that will provide valuable data we can use to push for more funding.
In short, if you have to come down with a post-infectious illness, this is easily the best time to come down with one.
Suggestions On How To Get Through This
But what to do in the meantime? Is there a way to increase your chances of recovery? Are there things you should be doing now? If COVID-19 is similar to the infectious events that triggered conditions like chronic fatigue syndrome (ME/CFS) in the past, there are no guaranteed ways to return you to health. Decades of reports from ME/CFS patients and doctors may be able to provide some help on what to do and what not to do.
Here are some basic and simple things that might help.
Taking COVID-19 Seriously
The First Thing is to Take Post COVID-19 Problems Seriously
Thinking your symptoms are something you can push aside or work through can be a recipe for disaster. Most people with COVID-10 recovery problems will not, thankfully, get ME/CFS but some likely will, and ME/CFS is not something you want in your life.
Studies indicate that chronic fatigue syndrome (ME/CFS) is more functionally disabling than heart disease, multiple sclerosis, kidney failure and other serious diseases. People with ME/CFS have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. Twenty-five percent are home or bedbound. One study found that only an astonishingly low 13% were employed full-time.
Please take your post-COVID issues seriously.
Pacing
Provide energy for healing
Pacing, you’ve probably realized by now, is critical. Studies have shown that people with ME/CFS who stay within their energy envelope and avoid the push/crash cycle tend to have fewer symptoms and qualitatively better lives. Pacing is believed to open up energy your body needs to devote to healing.
The hardest, and perhaps the most important, advice for anyone facing post-infectious problems is simply to pace, pace, pace. Rest. Don’t overdo. Pace mentally as well as physically. Try and calm your body and mind down and give your body a chance to heal.
Many people with ME/CFS, in retrospect, rue their attempts to push through these illnesses, which led to worsened health. Health Rising’s survey asking people with ME/CFS what they would have differently if they had only known indicated that many people felt that they pushed too hard and tried to return to normal life too quickly.
Different techniques from Counting Your Spoons, to living inside your energy envelope, to using heart rate variability (HRV) readings to manage your activity levels for better health, can be found in Health Rising’s Pacing and Exercise resource sections. Dr. Lapp provides a nice guide here.
Bruce Campbell’s CFIDS Self Help site provides the most in-depth information on pacing. (Campbell used pacing to recover.) It provides courses, checklists and a wealth of information on how to manage these diseases and “How to Make a NOT To DO List“. We’re very lucky to have it. Also check out Bruce Campbell’s book, “Managing Chronic Fatigue Syndrome and Fibromyalgia: Feel Better, Take Charge, Regain Hope“.
Check out Dr. Lucinda Bateman on Activity Intolerance and Pacing
Crash and Flare Busters (?)
Help your body to heal and limit the effects of crashes
Check out some possible crash and flare busters for those inevitable times when you go too far. Note that these are suggestions and have not been validated.
Coping
Rebalance the autonomic nervous system, tamp down the fight/flight system, reduce the stress chemicals that promote inflammation
Coping can make a difference – not just emotionally and mentally – but also physiologically. Studies have shown that both stress responses are disturbed in ME/CFS, and some believe the disease is at its heart a stress response disease.
Take it from Pema Chodron – a world renowned Buddhist with ME/CFS – who describes how mindfulness and pacing has helped her. (From the Bateman Horne Center).
Check out how Donna Jackson Nakazawa, a journalist with a serious autoimmune disease, improved her quality of life and health using mindfulness and meditative practices and yoga.
How to Be Sick – from the widely acclaimed book series by Toni Bernhardt, Buddhist practitioner with ME/CFS, on how to have as high a quality life as possible while being sick. She just came out with a compact version. Other books in the series include “How to Live Well with Chronic Pain and Illness: A Mindful Guide” and “How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow”
Mindfulness Based Stress Reduction (MBSR) – John Kabat-Zinn developed the meditative and mindfulness practices in the MBSR to help people with chronic pain. Courses are offered in many hospitals and clinics. Kabat-Zinn’s seminal book “Full Catastrophe Living” has been lauded by many. (Check out the Audio version – you’ll love Kabat-Zinn’s calming voice.)
Breathe Deeply
Restore autonomic nervous system balance, turn down the stress response and reduce inflammation
One of the first things Staci Stevens, an exercise physiologist with ME/CFS, does with her clients is teach them how to breathe more deeply. Breathing deeply enhances the activity of the rest/digest system and calms down the fight/flight system – which is overactivated in ME/CFS.
Breathing Techniques for Chronic Fatigue Syndrome and Fibromyalgia
Seeing Doctors
Get relief and support
“I wouldn’t have wasted a second seeing doctor after doctor who were not specialists in ME/CFS, especially at the beginning when I was so desperately ill and every trip took so much out of me. I would have realized that the extra stress of having people refuse to help me or judge me or blame me just made things vastly worse. I would have found a sympathetic and supportive doctor right away.” Curiosity
You may not be able to find a doctor who knows much about post-infectious illnesses or ME/CFS, but hopefully you can find a doctor who treats these illnesses with respect.
Ditch Bad Doctors – if you hit a bad doctor, don’t get blue in the face and waste your energy on them – they’re not worth the trouble. Instead, move on as quickly as possible. Your job is, after all, to find a good doctor.
Educate Your Doctor – we don’t know how closely those who fail to recover from COVID-19 will resemble people with ME/CFS, but as we don’t have guides for post-COVID-19 patients, perhaps those put together for ME/CFS will help.
- Do You Have ME/CFS?
It might help to know if you meet or about to meet the criteria for ME/CFS. The criteria requires that you have symptoms for six months, but if you’re not there yet, you can at least get a grasp of what ME/CFS is. If you do meet the criteria, you should know that you’re part of an active community that is advocating hard for you.
- Take the quiz from the Solve ME/CFS Initiative (SMCI).
#MEAction will host a panel discussion with ME/CFS experts on August 29th at 3:00 PM PST to teach clinicians how to recognize and manage ME. Clinicians and med students register now.
Maximize your doctor appointments
Doctor appointments can be particularly tough. You have a lot of symptoms, your mind is whirring, your short-term memory is pretty much shot and your health is at stake! In short, you need to get organized like you may never have before. Check out a bunch of resources on how to get organized, talk to your doctor about ME/CFS or chronic pain, track your symptoms, etc.
Check out the Solve ME/CFS Initiative’s webinar: “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome” to find out how to have more effective doctor’s office visits
ME/CFS Information Packets for Physicians May Help
- Check out Workwell’s MedBridge course on identifying and managing ME/CFS. – Workwell Foundation offers a 2-part continuing education course for physical and occupational therapists through Medbridge that addresses many of the complex issues facing the rehabilitation of long-term COVID-19 patients. Workwell has dedicated over 20 years of research to understand the metabolic, pulmonary, and cardiac complications of people suffering from post-viral ME/CFS. (from Caroline Christian).
- “Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: What Every Family Physician Needs to Know” – published in the Family Doctor: A Journal of the New York State Academy of Family Physicians. Produced by ME/CFS expert Dr. Susan Levine, Mary Dimmock and Terri L. Wilder, the article provides a basic introduction to ME/CFS. A good start – not too long, not too short – for doctors who are willing to learn.
- The IACFS/ME Primer for Clinicians – extensive primer on diagnostics and treatment put together by ME/CFS experts. Provide it for more interested doctors who are willing to invest some time.
- Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer – Extensive primer for doctors treating young people. Share the IOM report (2015) and its diagnostic algorithm with your doctor. The Institute of Medicine (IOM) is the most highly regarded medical reporting group in the United States.
- Unrest (2017) – Tell your doctor she/he can get continuing medical education (CME) credits for viewing the Sundance Award Winning Documentary. It’s a powerful and evocative film centered on severely ill ME/CFS patients.
Check Out What ME/CFS Experts Are Doing
Diagnosis and Management
While you probably don’t know if you have or will have ME/CFS, you might want to check out how a knowledgeable doctor assesses the disease. This doctor, Dr. David Kaufman, was formerly an HIV specialist and he now works with another infectious disease specialist in the San Francisco Bay area.
Dr. Bela Chheda, An Infectious Disease Doctor Talks on ME/CFS
Now specializing in ME/CFS, Dr. Bela talks about her treatment approach to ME/CFS.
The Bateman Horne Center Video Series
The Bateman Horne Center has produced a series of video presentations by longtime ME/CFS practitioner Dr. Lucinda Bateman. This one provides basic facts on diagnosis and treatment.
Check out more resources including Health Rising’s How To Diagnose ME/CFS, including the many comorbid diagnoses associated with it and disease mimics.
Wondering if your symptoms match those found in chronic fatigue syndrome (ME/CFS) and/or fibromyalgia? Check out “In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms”
Getting Restorative Sleep
Poor sleep is a hallmark symptom of ME/CFS and FM. Not getting a good night’s sleep can worsen symptoms. Dive into the mechanics of good sleep with Dr. Bateman and learn why sleep disturbances occur and how to implement strategies that improve them.
Check out more sleep resources in Health Rising’s Sleep Resources section including: Head’s Up – An easy way to improve sleep? A bed of nails for better sleep? How to improve your sleep hygiene – good sleep practices; biofeedback saves one person; Health Rising’s Sleep Series; its 1000 person Sleep Survey and more.
Chronic Widespread Pain
Pain is one of the most troubling and hard-to-manage symptoms of ME/CFS and FM. Dr. Bateman teaches about the various types of pain, how pain is amplified, and treatment strategies to improve your own pain management.
Instead of opioids and over-the-counter analgesics, some people find low dose naltrexone (LDN) and cannabinoid products helpful.
Health Rising has done many blogs on low dose naltrexone – check out it’s Low Dose Naltrexone Resource Center for ME/CFS and Fibromyalgia
Health Rising’s Cannabis Series for ME/CFS and FM
Health Rising has produced many blogs on Cannabis including a 4-part series of in-depth blogs on using Cannabis for pain relief, sleep and improved cognition.
Cognitive Impairment
People with ME/CFS and FM often suffer from cognitive impairment that can lead to brain fog, trouble with word finding and more debilitating symptoms. In this class, you will understand the types of cognitive issues that commonly occur, possible causes, and how to implement strategies to improve cognitive function.
Orthostatic Intolerance (OI)
OI, Postural Orthostatic Tachycardia Syndrome (POTS), neurally mediated hypotension (NMH), and orthostatic hypotension can all be manifestations of ME/CFS and FM. In this class, you will learn to access orthostatic intolerance objectively, how to differentiate between these syndromes and strategies to manage the symptoms they present.
Check out many resources on orthostatic intolerance in Health Rising’s Resource section including: Dr. Rowe’s guide to treating it, a home test for orthostatic intolerance from the Bateman Horne Center, a home postural orthostatic tachycardia test, a great portable chair for shopping, etc.
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- Check out more treatment resources here.
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How to Tell the Difference Between Depression and ME/CFS
Many doctors may confuse post COVID-19 illnesses or ME/CFS with depression. Depression/anxiety is a natural outcome of having a chronic illness and you may be depressed, but being depressed because of an illness is a far different thing than depression causing your illness. If you are depressed, get treated for it, but run from doctors who think all you have is depression.
How to Prove To Your Doctor That You’re Not (Just) Depressed – Check out ways to convince your doctor that you’re not just depressed.
Keep Track of Your Medication/Supplement Use with this interactive document produced from Kelly, a person with ME/CFS.
Exercise
Specialized exercise programs that have been designed for ME/CFS can help avoid deconditioning – which causes many problems on its own – and to stay as fit as possible and improve your quality of life.
Studies have shown that because many people with ME/CFS have broken aerobic energy production pathways, they tend to rely on anaerobic energy production pathways which produce toxic by-products that result in fatigue and pain.
These exercise protocols developed for ME/CFS use short exercise periods interspersed with rest which keep people safe. Some use heart rate monitors to keep your heart rate down. Many use recumbent exercises.
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- Check out Health Rising’s many resources on exercise and ME/CFS
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Diet
While no one diet has been shown to work best for ME/CFS, general dietary guidelines have emerged. There are plenty of exceptions, but more people seem to do best with small, lower carbohydrate, and higher fat and protein meals. Morning fasts help some. One universal recommendation is to knock out sugar and processed foods.
Check out Health Rising’s Diet resources including How a FODMAPS diet may able to reduce pain, anti-inflammatory foods and diets, how we’re wired to eat unhealthy foods, (and how to discover what those are), ketogenic diets and more.
Increasing Blood Volume
Because people with ME/CFS can have very low blood volumes (no one knows why), increasing blood volume by drinking more liquids supplemented with salts, electrolytes, and special blood volume enhancers is often recommended.
- Check out Health Rising’s page on increasing your blood volume here.
Other Treatment and Coping Basics
- Treatment Resources – check out over 250 ME/CFS and FM treatment resources on Health Rising.
Disability and Finances
Many state and federal programs – probably many more than you think – can help out with finances. Check out the amazing How To Get On website, put together by a person with ME/CFS, to learn about the many opportunities out there.
Disability
Few people anticipate or want to think about going on disability, but preparing for it, in case you have to go this route, can reap dividends. Keeping a daily or weekly journal that highlights your symptoms and, most importantly, your functional impairments – what you can do or can’t do – can provide valuable evidence for your case. Using a Fitbit or similar tool to document your steps per day can help.
Seeing your doctor regularly and emphasizing your functional impairments in the doctor’s office is very important. Disability cases are not won on symptoms, but on documenting your inability to work; i.e. your functional status. Having your doctor regularly document your functional status can do wonders for your case.
Exercise testing – Two-day exercise tests can provide a kind of gold standard for disability evaluation. These tests – which involve two short maximal exercise tests, done a day apart, are one of the only ways to objectively document your functional status. They’re very hard to beat in court. The Workwell Foundation in California has been providing disability evaluations using 2-day exercise tests for many years. They’ve reported that 90% of their clients have received disability using their reports.
Guides to getting disability, focused specifically on ME/CFS, have been created.
How to Apply for Social Security Disability Benefits If You Have Chronic Fatigue Syndrome (CFS/CFIDS) – by Kenneth S. Casanova – available free from the Mass. CFIDS Association website. The best single resource on disability for ME/CFS.
Four-Part Series – Check out Cort Johnson’s four-part series on Disability and Chronic Fatigue Syndrome (ME/CFS): Disability I/ Getting the Diagnosis / Documenting Your Limitations /Resources.
Check out How To Get On – a superb website featuring many articles on how to get help including how to get on disability. Check out many more disability resources here.
What a brilliant piece Cort! This is so comprehensive and so helpful. How I wish this calibre of information had been available everyone with ME had at the very beginning.
Thanks so much for this, Cort! I sent it to my nephew who has not fully recovered from Covid. He still has intermittent fatigue episodes and I’m hoping he doesn’t progress to ME/CFS. But I’m encouraging him to rest, not push and he will be seeing an Infectious Disease doctor as well.
Thank you Cort, so very helpfull!
Longhaulers given suggestions by top independent medical news website:
https://www.thailandmedical.news/news/covid-19-rehab-supplements-that-could-help-with-chronic-fatigue-syndrome-myalgic-encephalomyelitis-manifesting-in-recovered-covid-19-patients
This website grinds out cutting edge news.
I had a look at that link sunie and I found another link within it, to an Irish study, which is fairly horrifying! The Irish study uses the Chalder Fatigue Score – which I believe was developed by Trudie Chalder, Professor of Cognitive Behavioural Science at the Institute of Psychiatry in King’s College London – one of the authors of the PACE trial.
My reading of the Irish Study is that they are completely out-of-date, and are offering an unhelpful conclusion.
Tracey Anne, thanks for the heads-up
i should have clarified that their articles are latest on covid— time after time. liked that their site is offering advice to long-haulers for it adds attention to the fact that there are covid long-haulers
Yes they do have some very interesting articles.
I live in Ireland, so the Irish study is a bit close to home. I downloaded it and had a good look – it’s not peer reviewed and as they state themselves should not guide medical practice – my view is they seem to fall into the clichés of this illness and they’re clearly influenced by the PACE trial and even talk about increasing exercise and having therapy.
In fairness to the medical profession here, in Ireland, they’re working flat out with Covid patients and now the backlog of non-Covid patients and I presume they undertook the study and produced it with the best of intentions. But they don’t know what they don’t know.
Thanks Cort, a treasure trove of good information and links, which I will be sharing with my CFS/ME/Fibromyalgia group over here in the UK. I’ve got a lot of reading to do!
What a great resource for these people.Cort!! I can’t imagine how encouraging and helpful this would have been for us “long haulers” with CFS when we first got sick!
Drs everywhere should show this article to the people who can’t recover from COVID-19…
Great work! You are such a blessing!
All in one place, this great! Thanks Cort!
Nice!
Great piece. Which I had this years ago.
I would think if anyone’s made it onto this site they’re possibly struggling with not getting better, as they may have expected to.
If nothing you would normally do/not do is working, that’s not a great place to be. Maybe things are not quite making sense anymore and you’re finding it difficult to think or remember anything.
I feel that Cort’s blog above is a really comprehensive round up of what may be useful to someone who is not finding recovery coming easily to them.
My own view about myself is that I can be my greatest helper and my worst enemy.
Helpful things are that I’m fairly open to ideas and am reasonably sensible. Unhelpful things (these are not necessarily intentional) are that I am not good at assessing when I am tired and even worse at doing something about it.
One aspect of my current situation that I am trying to tease apart is the difference between being tired and my brain running out of energy. These are different.
The fairly obvious problem (that is difficult to live with) is that as my brain has less energy and is therefore functioning less than optimally (!) I am less and less able to accurately assess my situation.
So, I am now trying to stay more in what I see as a green zone (better brain functioning – I have predominantly residual brain issues).
I have finally accepted and maybe finally understood, that I cannot and will not be successful in pushing on through my brain sediment to reach a clearer space. Alternatively if I rest up – especially my brain/mind – I will achieve what I am seeking.
It seems very passive and is remarkably difficult to put in place – for me anyway. But if I actually do this my quality of life is better.
And it’s here that really any of the above resources may be helpful in supporting someone in their sometimes solitary endeavours -because they acknowledge that these difficulties are real and most definitely not a figment of their imagination.
Having said that, if people do have mental health issues, then these need appropriate and sensitive care too.
This is a nice “first-aid” manual for anyone getting ME/CFS-like symptoms. An “ME-old-timer” like me still finds useful info in it, so good work Cort!
I’d like to add one thing to the Pacing section. Plenty of Covid patients, especially those that were put into an artificial coma during Covid treatment, will have such loss of muscle function and such high deconditioning that at first they *will* likely benefit from the classic graded-exercise-like therapies. However, when they reach a certain low level of functionality as time goes by, doing exactly that may burden their recovery and entrench them into a chronic ME-like state.
Having first results with exercising that clearly help recovery and a medic community still being convinced that exercise can only improve and not hamper health during recovery, there is a huge risk for patients realizing that extra exercise hampers them later in the recovery process will take plenty and plenty of time and mental flexibility.
I believe that getting better knowledge of this turning point when it comes to (extra) exercise switching from being helpful to becoming harmful will be a main challenge for many post-Covid patients and the medical community in order to escape getting stuck with ME.
Thanks Cort, great article. I am one of the folks on the ‘Covid long haul’ category that is afflicted with PVFS (currently 5 months bedridden). I must say that I was lucky enough to be on the early learning curve and found this and other ME/CFS resources weeks into my illness onset. I speak with so many people in Covid groups that are just starting to see the patterns of ME/CFS emerge (recognizing PEM, realizing OI, noting temperature intolerance, etc) through discovery of commonality with other long haulers. These folks are not learning ME management from doctors or treatment centers, as there is also a mix of long haulers with non-ME lingering ailments that obfuscate the symptoms, and the long term respiratory issues seem to still get the spotlight. But I predict this page will get lots of hits over the coming months.
Thanks Diane for your nice comment.
It will be interesting to see if the respiratory symptoms fade over time – leaving behind the fatigue, PEM, etc. That’s been the pattern in past ME/CFS studies which have studied a variety of infections. The symptoms are a bit different in the beginning but all resolve to the same general syndrome.
It’s going to be so interesting….
Please pass the blog around and good luck!
You guys may save everyone 🙂
Hi Diane. I think I am also a covid longhauler and just starting to learn about all of this. I have 3 young kids and 1 is also really struggling. You sound like you really understand it. I’m so sorry youre struggling with long haul too. Would you be willing to chat? Id really love to understand all of this more so I can figure out how to help us both. Thank you so much.
Cort-I have not gone into all the links yet but I wanted to ask if there is anything about Annie Hopper’s retraining (rehab) program for the limbic system? Just as with stroke victims, some of the ME/CFS problems like POTS, have been rehabilitated through this six month program. She does emphasize that you must stay within your energy envelop.