Managing ME/CFS & (maybe) Long COVID symptoms
How I got my energy, and my life, back from ME/CFS
I was diagnosed with Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in 2011, just after I submitted my PhD thesis. I had been house-bound for months, couldn’t stand for more than a minute or hold my arms above my head long enough to wash my hair. I couldn’t hold a conversation without losing track and was losing weight despite eating constantly. I was 27 years old and, while my world had totally fallen apart, doctors told me repeatedly that I was completely healthy. My blood tests were normal, so there was nothing wrong with me and that I must be depressed and stressed because of my PhD. Essentially, the medical professionals told me that my illness wasn’t real and if I felt bad than it was my own fault.
As a scientist I argued that just because the limited panel of tests came back normal, it didn’t mean that nothing was wrong. It was just that they hadn’t tested the right thing, or perhaps the standard “normal” wasn’t right for me. There were mumbles about NHS budgets and needing more justification for further testing, but really it felt like they just gave up on me.
When you are chronically ill, exhausted and suffering from Brain Fog, it is really hard to be your own health advocate.
That’s why, in a very small and selfish way, I am almost envious of the Long COVID label. There is a reason you feel exhausted, and the plethora of other vague symptoms, that doctors recognise as real and ultimately not your fault.
It’s taken me a long while to get here, and a lot of research and effort, but now I manage my symptoms pretty well, on the whole. Most days I have enough energy, I don’t ache and I can think clearly. I still get flare-ups that send me to bed, sometimes for days at a time, but I am better at preventing, fixing and managing them now.
The biology behind my ME/CFS
I’m a biologist, so I had to look into the biology of ME/CFS (feel free to scroll down to the tip list below!). There are a lot of unanswered questions, but I learned that my symptoms are likely the result of malfunctioning immune, digestive and neuroendocrine systems. I am probably genetically predisposed to immune dysfunction, and it was probably triggered by a virus. Here is a quick synopsis of some of the key things I have found out about my body and ME/CFS.
Immune system
The immune system is a vast network of cells (e.g., white blood cells), proteins (antibodies), chemicals (e.g., cytokines), glands (lymph nodes) and organs (e.g., spleen) that detects and mounts a response to a threat. This response could be a general, systemic reponse (e.g., inflammation) or highly specific, where targeted antibodies are used to attack specific microorganisms, like a virus. Immune responses are energetically costly. This means that your body spends energy when your immune system is activated, when you are fighting an infection or healing an injury.
The immune system can go wrong. It can identify substances or parts of your body as a threat. When this happens energy is spent attacking healthy tissues or unnecessarily maintaining an elevated inflammation response. This costs you two-fold, first the energetic cost of mounting the immune response and secondly in the damage that immune response does to your body. As a result, you feel exhausted.
Autoimmune diseases are an example of the immune system going wrong and being primed to attack healthy tissues and cause damage. There is often a genetic predisposition to autoimmune diseases (they run in families). Examples of autoimmune diseases include Hashimoto’s Hypothyroidism and Autoimmune Hepatitis, though the list is long.
Some scientists suggest there is evidence that ME/CFS is an autoimmune disease, and is associated with changes to cytokine profiles. Cytokines are small proteins used in cell signalling and modulate interactions between endocrine (hormonal) and immune systems.
Given that 70–80% of all immune cells operate in the gut, and gut microbiota regulate immune homeostasis (balance), it makes sense to me that immune dysfunction, such as autoimmunity or chronic inflammation, likely originates in the digestive tract.
Digestive system
People with ME/CFS often have digestive disorders. Our digestive system forms a huge barrier between our body and the environment. It is responsible for breaking food down into smaller and smaller particles until they can be easily absorbed and assimilated into the body. The intestinal barrier system includes mucus, epithelial cells, immune cells, tight junctions (which provide a barrier door-like function at the cellular level) and gut microbiota. This barrier system protects us from potentially harmful pathogens while allowing nutrients to be absorbed into our bloodstream. If this barrier system goes wrong, or becomes damaged (such as from an infection), our health will be impacted.
It is well reported that dietary components (food) can affect the intestinal barrier system, such as causing increased intestinal permeability by influencing how the tight junctions function. Dysfunctional tight junctions can enable large molecules to pass through the intestinal barrier system, triggering an immune response (e.g., inflammation). Food-related absorption and inflammation issues with the digestive tract are well-described, such as for Celiac disease, Irritable Bowel Syndrome and Ulcerative Colitis, which highlight the interaction between the digestive and immune systems.
Therefore, what we eat over the long-term can affect how efficiently we absorb nutrients and how activated our immune system is. And that’s before we factor in underlying conditions (autoimmune/inflammatory) or damage from bacterial or viral infections, including dysbiosis (an imbalanced microbiota).
Neuroendocrine system
Neuroendocrinology is the study of how the nervous and endocrine (hormonal) systems interact. The hypothalamic–pituitary–adrenal axis (HPA axis or HTPA axis) is a major neuroendocrine system and it regulates our response to physical and emotional stress by controlling levels of glucocorticoids (e.g., cortisol). Among other things, cortisol modulates the inflammation response, and energy storage and expenditure, and likely plays a role in the symptoms of people with ME/CFS and potentially Long COVID.
People with ME/CFS often have HPA axis hypoactivity, meaning a that their neurobiological stress response systems doesn’t work properly. This dysfunctional HPA axis is thought to be the result of overactive immune-inflammatory mechanisms that produce oxidative and nitrosative stress, causing tissue damage, and the release of cytokines. Cytokines in the blood and cerebrospinal fluid (CSF) of CFS patients are closely associated with the progression and severity of symptoms.
How I Manage ME/CFS
Armed with this information above, I decided to try and take some control over my health, my chronic fatigue and strange symptoms. I wasn’t given any medical help, so the worst that could happen was nothing at all. It was worth a shot, and it worked.
I still get flare-ups, and I know I always will, but now that I understand that my symptoms are linked to my immune, digestive and endocrine systems, I can manage my health. I am back in control.
My aim is to keep these three systems as calm and balanced as possible. I try to avoid triggers, like infections (bacteria and viruses), certain foods, and stress.
1. Dietary changes
Changing my diet had the most significant impact. It was gradual, but big. I’ve always eaten a well-balanced diet, with lots of fruits, vegetables, but with CFS I took the approach that I needed to proactively heal my digestive system so that I could absorb nutrients and reduce inflammation. I was aware that I may have a lot of nutrient deficiencies. I took a course and became a qualified health coach.
I decided to eat only highly nutritious foods that could quickly and easily be absorbed by my body and not trigger more immune responses.
I ate densely-packed soup made with homemade chicken bone broth. I ate it morning noon and night, as much as I needed to feel satisfied. I mixed it up with different herbs and spices, and particularly like adding ginger and turmeric, which are apparently anti-inflammatory. I would include the fat and a lot of chicken as well as a wide range of vegetables. A lot of people turn their nose up at this. It worked for me and I go straight back to it if I feel run-down, stressed or a flare-up coming on.
Bone broth contains easy-to-absorb minerals and other nutrients and is gentle on the stomach. This was a huge clue that my symptoms are linked to my digestive system.
High fat diet and alcohol apparently cause the tight junctions to open. I avoided all processed foods and the only carbohydrate I had was from the vegetables, and occasionally some rice. As such, I cut out gluten, which I believe I have an intolerance to and may have been damaging my gut.
I also avoided caffeine, sugar and alcohol, which were messing-up my cortisol levels.
In general I now follow a version of the Autoimmune Diet, but always go back to broth if I find my energy levels dropping.
2. Get copies of all your blood test results, study them & act
Your test results are your data, so under GDPR you own them and you are entitled to copies. I have learned the hard way that doctors only scan blood tests for out of range results. This means that if your levels of a key vitamin, for example, are the lowest possible of the “normal” range, it won’t be flagged as an issue.
I really struggle to get my head round this. I think that there must be so many people suffering with symptoms that could be easily fixed by working to levels best suit them.
Having become bedridden again, I looked back at past blood test results and discovered a “low B12, follow-up required” comment from the lab. The doctor at the time had not acted on this. After taking a new B12 test privately (because the NHS wouldn’t cover it without a good reason and apparently being bedridden isn’t a good reason) I found I had a B12 deficiency. I have since been diagnosed with Pernicious Anaemia — which used to kill people before they knew how to supplement with B12!
Given that ME/CFS is often linked with digestive issues including absorption problems, monitoring vitamin and mineral levels should be standard.
The take home message from this point is that the “normal” range for most vitamins, minerals and markers are broad and are supposed to represent levels for all human beings. Someone else may have coped just fine with my B12 levels, but for me it was the difference between constant exhaustion and a full and functional life.
If you keep copies of your results you will be able to track your symptoms and levels through time.
3. Use supplements
I used to believe that eating a healthy, diverse diet would give me all the nutrients I needed. Given that people with ME/CFS usually have digestive disorders, they are also frequently depleted in various vitamins and minerals. Ideally, ask your doctor to measure a full suite of vitamins and minerals and then supplement accordingly.
I can’t recommend supplements to you, but this is what I need to function: Vitamin D, vitamin B12 (injections 2–3times per week), folic acid, ferritin, B complex, vitamin C, magnesium (epsom salt baths).
4. Prioritise sleep
Insomnia is a big issue for many ME/CFS suffers. Getting into a good sleep routine can be helpful and it helps to keep the adrenals of the HPA axis calm. This doesn’t mean you always need to be in bed by 9pm, but perhaps doing so on a regular basis will help you in the long run.
4. Prioritise people and activities that deserve your limited energy.
I decided that I needed to focus my limited energy on what and who mattered most. This involved a lot of inward reflection and enabled a sudden clarity on who took my energy and who conserved it. As I became more and more ill, I no longer had the energy for activities I didn’t enjoy or need to do, or the people that took too much of it with nothing in return. In short, I became pretty ruthless about who and what would get my energy.
5. Don’t resist a flare-up; it only makes it worse.
I can usually feel when I am getting ill. The worst thing, but perhaps most human thing, I do is to try to compensate for the tiredness. I overdo it on caffeine throughout and day and then use wine to boost my energy in the evenings. It is a bad plan, but one that is oh so tempting because staving-off the inevitable energy deficit means I can pretend, at least for a little while, that everything is fine and I can get things done. I do not suggest you do this. It always makes my dip worse.
6. Acknowledge that living with it may be the new normal.
This is really hard. Be kind on yourself. I still struggle with this, especially when I’m in a flare-up. I get angry that I’m missing out on life and can’t do the things I want to because my body won’t let me. I know that this doesn’t help. I’ve got better at accepting it, and having long periods between flare-ups really helps.
7. Get tested for autoimmune diseases
I’m not sure yet how relevant this may be specifically for Long COVID, though I suspect if it is a result of immune dysfunction, then autoimmune diseases are more likely. Autoimmune diseases are notorious for causing vague and diverse symptoms that vary from person to person. It’s worth making sure any underlying autoimmune condition is treated properly.
8. Educate your family and friends.
Hopefully the “Long Covid” label will be of use to you here and you’ll immediately have a super understanding support network. I really hope this is the case for you as it is so important. If not, know that you are not simply grumpy, lazy or useless. Keep explaining and provide books and articles that describe it. When you’re having a flare-up, your support network can be key in ensuring you have a ready supply of nutritious food, all your supplements and take tasks from you (watching the kids while you take a nap is particularly helpful!).
9. Change doctors if you need to
You’re likely in this for the long haul, whether you are able to manage your symptoms and function somewhat normally again for not. Finding a doctor who will listen and be supportive is key. While I have overcome most of my symptoms, I still get flare-ups and I have developed new autoimmune diseases. Finding a good doctor may be hard, especially in the UK where your ability to choose your doctor may be limited.
10. Don’t give up.
When I was first diagnosed I was housebound and thought my dreams were over. I still have huge set-backs, but on the whole I’m ok. I have two kids, that I home eductate, and I work as a freelance editor. I would never have thought this would be possible. Long gone are the days of shuffling across my apartment only to need to take a nap on the other side. I can go for runs, be out and about all day and even socialise in the evenings.
I can’t promise you anything, but if you haven’t tried some of the points above, then maybe it’s time.
Remember, if they haven’t found anything to explain your symptoms, it is because they haven’t looked in the right place yet or the “normal” range isn’t right for you.
Please clap and comment below, let me know how you are, what has helped you and what you think of my suggestions.
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Take care!
Caroline
Also check out my article about the UK’s NICE guidelines for ME/CFS
