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Lunchtime on the 16th March I developed a severe sore throat. I worried that it might be the dreaded COVID-19. Back then it didn’t seem like coronavirus had really got to Scotland and anyway didn’t it start with a cough and a raging fever? I thought I was being alarmist.
Within 48 hours I was persistently coughing with a bad, dry viral cough. I was sweating through several sets of pyjamas. My body didn’t mount a high fever though.
At that time you were only tested when you went into hospital. By day 6 my partner packed a hospital bag because I seemed to be on the bad trajectory. I was having difficulty breathing, and spent the night on frustrating 111 calls.
By the morning of day 7 I had a movie scene style turnaround and my immune system seemed to both get its arse in gear and get things into perspective. It was a very pleasant surprise to find that my screwed immune system could fight such a scary new virus without going into a crazy cytokine storm panic. Of course these details also meant I was never tested, but I think it unlikely this was a different virus.
Initially I was elated to have got through it alive (and I assumed acquire immunity early) in my imagination it was no longer a distant threat hurtling towards me, it was a mortal enemy I had slain.
At the same time with pre existing ME and POTS, at almost entirely housebound severity level, I was stoically aware that being more sick for months was the best case scenario. Even in my ‘mild’ case this virus felt at least as serious as glandular fever and that had not gone well for me.
The specific coronavirus symptoms lasted around 8 weeks, blurring into post viral fatigue symptoms (PVFS – if you technically can have this when you already have ME?). I can still get blips of coughing again with a distinctive feeling, it feels like I need to itch my lung. When this happens I’m not sure whether to react to this as a potentially new infection, should I be isolating and getting a test?
Does anyone else with ME feel like you collect symptoms as a sort of unwanted embodied memory box of Viruses I Have Known? It’s a box I’d like to throw on a bonfire. From this lived experience new coughing is more likely post viral weirdness in my opinion, though disappointingly a recent study found that immunity had gone after 4 months so catching coronavirus again is possible. I’m now emotionally processing potentially losing immunity before losing the symptoms.
I’ve joined the Body Politic slack group for post-Covid people partly to get information for myself and partly because of the concerns those of us with ME have that people with PVFS will be given yet more bad advice with a new generation of people having worse than necessary outcomes.
This survey from people who later develop ME indicates that early advice does matter:
“Almost 9 out of 10 respondents deteriorated having followed this advice [to increase activity], compared to less than 1 in 10 who were told to rest. Healthcare professional’s initial advice had a significant effect on patient outcomes”
NB of course data is missing from those with PVFS who recovered completely and didn’t get ME, and there could be various important differences between the two groups.
“Many people who satisfy ME/CFS criteria at an early stage after an infection no longer satisfy the criteria at a later stage e.g. post-mono/glandular fever, %s were 13% & 4% at 6 & 24 months. Perhaps reassuring for some longhaulers” @TomKindlon on Twitter (he’s a good source of ME news). I know that research is not specific to COVID-19, but that’s not been around long enough for similar research yet, I’m hoping this will help you not panic if your PVFS is very much like ME right now.
Anyway I’m going off in a tangent from the main point of this post. I’m finding that Body Politic people tend to want to pick my brains about differentiating between post-covid PVFS, ME and POTS. Instead of writing similar individual replies it will save me energy to share a link to this post.
Differentiating PVFS, ME and POTS
Disclaimer: I do differentiate between the conditions but my POTS doctor said that if people have ME and POTS together it was usually from the same trigger. So although my POTS was diagnosed years later I probably had both all the time and might not accurately tell the difference. Since PVFS is so under researched I don’t know if glandular fever immediately triggered ME and POTS for me or whether I had a phase of PVFS before I got ME. I don’t know if I’ve ever had PVFS without ME (or if there’s a meaningful biological difference at all).
I don’t have the energy budget available to reference surveys and research, so what follows is how I organise these symptoms in my mind, it might not be accurate or generalisable. I do listen to other patients though and used to read lots of research while I was NICE (clinical guidelines) rep for ME Action. Other people with ME and POTS may well disagree with me and I’d welcome that input as comments.
Post COVID-19 specific PVFS
Lung related symptoms – dry cough/tight chest. Initially these were the main symptoms and they were constant. Now I have very mild chest pain in the background, it’s not worth complaining about. It seems like I can still get little bouts of the cough.
Fatigue– I’m tired all the time fairly consistently. Neither ME nor POTS feel like that to me, contrary to popular understanding. Immediate fatigue after activity is a big aspect, though I get this with POTS in POTS it feels more cardiac related eg with pounding heart, tight band round chest, pulsing headaches. Post covid it feels like eating a meal has required too much energy, though a brief rest can get that back. In ME the repercussions of exceeding energy limits are delayed, longer and don’t feel like tiredness fatigue.
[If you’re confused re fatigue, chronic fatigue, Chronic Fatigue Syndrome and ME, that’s a big mess you might not want to get people with ME started on! I touch on it here. In summary chronic fatigue is a vague, poorly defined symptom which exists in many chronic conditions. It is not the cardinal, differentiating symptom for ME.]
My digestive system has become very sluggish in a way I’ve not experienced before. I do get IBS type symptoms (and perhaps mild undiagnosed gastroparesis) associated with POTS, that has been helped by low fodmap food. I also have the ME canary in a coal mine style over reaction going on. Those symptoms are loud, what I have now is like my digestive system has gone too quiet.
I’m getting more pain generally, but this is harder to separate out because it’s an increase for me rather than new. The headaches do feel different, it’s hard to describe it, perhaps all over and stingy (ME headaches feel like my brain is too big for my skull, or like a pole has been plunged through my head, POTS headaches pulse and are worse on standing, can be migraines).
Edit October 2020: I’m still feeling bad in a way that doesn’t feel like ME or POTS. The pain is mostly in my joints, especially in my hands and feet and joints I use (my ME pain is strangely unconnected to which muscles/joints have been used). Earlier on it felt like loose ligaments, glucosamine sulphate helped with that but it feels like the pain is getting worse. Last night I was awake most of the night with it. The sensation is burning, stinging inflammation. Ibuprofen makes no difference at all and paracetamol hardly any. Does anyone know what might help?
In between writing the post and this update I was getting skin rashes and welts and generally reacting to environmental stressors and scents more. That seems to have almost cleared up for now.
I didn’t have a really obvious loss of smell but perhaps my sense of smell is impaired, even when my nose is clear. I often don’t notice the smell of food cooking. Yesterday my partner was cooking an East Asian soup apparently with quite a distinctive smell, I couldn’t smell anything until I spooned out some lemongrass and put it up to my nose. There’s been complaints about how much essential oils I’m adding to reed diffusers, when I’m usually the more sensitive to scents. Unfortunately I can smell a bad drain smell though.
The fatigue is getting me down. I don’t think I’ve actually experienced the symptom chronic fatigue as a main symptom before. Being tired all the time feels quite different to needing to manage a limited energy budget (and then getting delayed payback symptoms if I exceed my energy limits). It’s unrelenting and boring whereas my experience of ME is at least varied in its manifestations.
NB I’ve written better referenced posts about POTS elsewhere on this site.
POTS mainly involves symptoms which get worse standing or sitting upright. The cardinal sign is tachycardia increasing by 30+bpm standing, though there’s lots of additional dysautonomia related symptoms. Symptoms might not go entirely lying down but you feel a definite relief.
Drinking water and having salt improves POTS related brainfog but not the ME type. If my POTS is worse than my ME then I can usually think well lying flat, but I lose clarity as soon as I sit upright. ME and PVFS brainfog seems more related to having previously done too much and often gets worse as the day goes on.
There is Orthostatic Intolerance in ME too but IMHO this is usually comorbid POTS or neurally mediated hypotension (NMH). Others probably disagree.
Again there’s immediate fatigue from activity but alongside POTS symptoms. You have a limited energy budget but the symptom payback is immediate. It feels cardiovascular.
Being too hot is particularly bad due to vasodilation.
Exercise can improve symptoms but as it can cause lasting, dramatic deterioration in ME I avoid it as the risk assessment is poor. At the moment my health is too bad for this to be a choice anyway.
Post Covid I’ve acquired a new symptom of occasionally talking nonsense (aphasia) when upright. I found a term for it but can’t remember right now. I think from increased post covid hypotension interacting with the POTS tachycardia response preventing fainting when not enough blood is getting to my brain. Has anyone else had this? It appears very neurological, POTS patients tend to be seen by cardiologists but can also be treated by neurologists.
The key differentiating thing from POTS is a delayed reaction to exceeding energy limits this is called various things including Post Exertional Malaise (PEM), crashing, setbacks. You can get this in PVFS too but I think in PVFS it feels more like fatigue (there isn’t the research really to know if these are different things or PVFS is short ME). I’ve only heard one person with ME say that fatigue is their only Post Exertional Malaise symptom and I know lots of people who have ME.
In ME it’s not that you feel tired 24-48hrs after doing too much, you feel sick. It can last a day or stick around for a long time. It can feel like you’ve caught flu or a light meningitis (neck stiffness, feeling like your brain is swollen, light and sound intolerance).
For clarity, I do experience fatigue as a symptom but it isn’t my main ME symptom and it feels secondary to other symptoms. If I’m awake in the night with pain, the next day I feel tired. There are also problems with recharging in ME, like an old mobile battery, if you exceed energy limits you can’t rely on fully recharging from one night of sleep.
For transparency, I should probably mention that I was a researcher on a project which coined the terms Energy Limiting Chronic Illness (ELCI) and energy impairment to refer to conditions which require energy budgeting (wider than ME, colloquially known as spoonies). Having a limited energy budget is a key part of ME (and POTS and PVFS, they’re all ELCI) but when you exceed your energy the repercussion isn’t necessarily the symptom fatigue. It might be but it doesn’t have to be.
If there’s myalgia, it tends to be all over muscle pain in ME, not the specific muscles you over used.
ME is a neuroimmune multisystemic condition and involves diverse symptoms, so I’m only concentrating here on the confusing ones re differentiating. ME-pedia is a site to learn more about ME. Apart from the tired-all-the-time misunderstanding another misunderstanding I’ve seen with long haulers is that neurological post covid symptoms wouldn’t be part of ME. WHO classifies ME as neurological.
Of course it doesn’t indicate that if you’re experiencing neurological symptoms you have Covid triggered ME. We know that neurological symptoms can be part of coronavirus itself.
Hopefully long haulers are going to make a full recovery, it just takes time. Convalescence is something which has been erased from our culture but is relevant now. You can’t push through to get better, doing less is the best option. Doing less is much harder work than being busy all the time.
When you do return to full and busy lives, please speak up for those of us with ME struggling to do basic daily living tasks, yet having to do our own campaigning. The last few decades have been dire in terms of lack of biomedical research and failure to listen to patient voice, especially in the UK. If our calls for post viral and ME research had been taken more seriously there might not be any long haulers today. I’m feeling regret that we didn’t achieve more in time for you.