There have been several times that people with Long Covid have been describing their symptoms in the media and I have thought how much they sound like the things we suffer from due to our deficiencies of B12, other vitamins and minerals and in some cases thyroid or similar problems.
What do you think?
If nothing else it has made me realise quite how much of what we live with is deemed completely unreasonable by others in a different situation and I hope it will increase the general knowledge of hidden illnesses.
In severe illness, the balance points of lots of systems are likely to get shifted. Could mean blood tests cannot be interpreted as usual. Could mean we need more, or less, of all sorts of things.
Afraid I feel so incredibly ignorant, I'd not wish to make any recommendations.
Very true - you have made me open my thinking with your comments too - there are some situations with deficiencies that are relatively straightforward: find out what's missing and increase the inputs to restore a good balance.
But if the body and systems have been damaged by a virus then often things are likely to show up in a similar way to a deficiency (because at cellular level that's what the problem is) but fixing the problem is not just going to be just a case of adding in more substrate... Although there is a possibility that this might help, and certainly shouldn't be discounted.
Good point about it being tricky re blood testing (without the current problems with Roche) because, like with us, high serum levels may indicate a cellular uptake issue, rather than being conformation that "all is well".
Very interesting and thought provoking - and, as you say, it makes ones' knowledge seem woefully insignificant! Thank you.
No-one can see tinnitus, vertigo, nerve, muscle, joint pain, pins and needles, numbness, weakness, fatigue, just to name some of ‘our’ symptoms but B12 deficiency affects the trillions of cells in our body. We may look okay but we are far from it.
More food for thought...COVID impacts on the autoimmune system...long-COVID symptoms are also symptoms experienced by those with autoimmune diseases (i.e.lupus et al). And active lupus disease flare causes the same cytokine storm exhibited by those with severe Covid requiring ITU care and ventilation. (Rheumatologist are the specialists who have been called on most heavily to treat COVID patients in ITU - because of the impact on the immune system).
Recent research has identified raised auto antibodies post-COVID and its hypothesised that Covid may trigger Lupus - or lupus like disease (sorry, but I can't find where I've filed that paper so can't post right now - if I find it, I'll pop back and post it).
The symptoms are also those experienced by many with ME, CFS, PVS - and my personal thoughts are that these 'conditions' will, at some point, be better identified as autoimmune disease - and treated as such. (I could add FND to this as well). Some research thinking is now pointing in this direction - but not quickly enough!
For interest, here's a couple of posts that appeared on the Lupus forum...
I think there are a lot of people with acute and chronic illness (lupus, ME, CFS, PVS, FND to name just a few) who present with the same symptoms as so called long-COVID - and so let’s hope that the research into long-COVID (and subsequent treatments) will have far reaching benefits for many.
It'll be interesting to see if the planned treatment clinics for long-COVID patients will be opened-up to support the many who suffer exactly the same symptoms because of other medical conditions - many of whom are simply left to suffer alone and cope without any medical support. Call me a cynic but...🤷♀️🤦♀️😡.
So...it’s a puzzle...with many dots still to be joined. Fingers crossed for us all.
I always, and I do mean literally every single time the subject comes up, think of Awakenings. Seemingly the result of the 1917–28 epidemic of encephalitis lethargica.
I've put it on my book-buy list...I think it’s going to a brilliant but heartbreaking read. But also a testament to human endeavour, to human spirt...to everything that makes us human. Or just makes us. Or not, as the case may be.
Think it' going to be one of those rare books that will lodge in my brain forever!
To be clear - I never read the book! But I have read some other things by Sacks that refer to the encephalitis lethargica epidemic. And (of course) watched the film.
I am quite familiar with the ME end of things (this was my original diagnosis...not sure whether it still applies to me or not now). I agree that this remains an underfunded area of research. Interesting that some think similarly that ME/CFS may end up being 6 distinct illnesses.
Oh for more research. I just hope that the support that people are lobbying for long COVID won’t end up being the “its all in your head, snap out if it” 9 month treatment that’s currently on offer by the NHS. This has pretty much been proven by science that it doesn’t work. In fact there seems to be a lot of invisible illnesses that get kicked into the long grass in terms of research and NHS support. I suppose it’s easier to ignore?
CBT or similar psychological treatments seem to be popular (and cheap) so whether science will prevail remains to be seen I suppose. The cynic in me fears that after the pandemic is over these ‘long Covid’ sufferers will conveniently be given an ME diagnosis and ignored.
That was also my original diagnosis after I had my last son.PND and M.E.I know now it was neither it’s was more than likely my b12 was on the floor as I was In intensive care after badly haemorrhaging from the birth,I never saw my son for 48 hours I was too poorly and of course lost the bond,I couldn’t really feel much for him I just went through the motions bottle feeding changing etc but was too ill.I had ECT treatment ,barbaric,then 6 years later still unwell,a new gp told me Id had coxsackie b virus for all those years,6 years Of misery and pain and that was the “title” M.E.No treatment of course just psychiatric referrals as it was “ all in our heads” in those days nearly 40 years ago.b12 deficiency has a lot to answer for and right from the start of this so called pandemic I’ve injected every other day to keep levels very high and taken High dose vit d3/k2 and I think this will help us avoid infection.I don't know if you are aware they are asking for volunteers for six months trial on vit d high doses in the fight against Covid,this was suggested and ignored by the “cranks” as they were termed,long ago.same with plasma transfusions suggested long ago and ignored.They’re now asking for men infected by Covid and recovered to donate plasma so they can use their antibodies.Sometimes the answers are right under our noses ,nature has a very cruel way of testing us knowing there’s an answer there somewhere but if we are fighting man made virus,s it’s a whole new ball game isn’t it.x
Slothlike, I googled about ME/CFS possibly being 6 distinct illnesses but couldn't find it, what are those 6?
I hope they test people with Long COVID properly and find out exactly what's going on with them physiologically and treat it. Not with graded exercise therapy or counselling! Could be so helpful for people with similar issues.
It’s a theory being bounced around by a few of scientists. I think at both the OMF at Stanford and Nancy Kilmas have suggested that it may be more than one type of condition. Also Professor Jonathan Edwards was suggesting that it may be up to 6 different conditions on another forum I use. I think these different groupings have been suggested from various routes (cytokines, cell energy studies). Still just being postulated like long Covid. There is an article in Nature (bit old now and quite long) that elaborates a bit ...but in research terms this is really early days. I thought it seemed to be similar ...maybe that’s what researchers say when they can’t work out an overall pattern?
It's a great article, thank you again. "Montoya’s leading hypothesis is that ME/CFS begins with an infection that throws the immune system out of whack."
I am in agreement, I think it’s not cynicism it’s realism. The NHS is pretty good at dealing with acute events but if you have a chronic condition it’s a different kettle of fish. So, unfortunately, those with long COVID sufferers may indeed be left to just put up with their symptoms which is rubbish.
Very interesting! All my problems started a couple of years ago when I had a random virus. As a healthy 36 yr old. One evening I had a v. high temp, next day felt fine, a few days later I had a rash resembling measles, that faded after a couple of days then all my joints swelled up (post viral arthritis?) I went to docs for a blood test and it showed inflammation, macrocytosis and borderline low b12. After a battle I got an injection, 2 years later, I'm self injecting every 3 days and feel mostly back to normal but still dont think I can do as much as I used to. Viruses can be really nasty!!
Sorry, should have been a full stop there 😂 It took a few months to get the first injection as my result was borderline low. They eventually put me on 3 monthly after I saw 4 different doctors but now I self inject as that wasnt enough and I gave up begging when they told me I had depression rather than a deficiency! I've read that other people on here have gone years and years without the correct treatment though so I am lucky!
🙊😂 Oops about typo. Even so, a few months and 4 doctors. Talk about jumping through hoops. I’m pleased you are self injecting and love the positive attitude. 😤 Of course you had depression (in my best sarcastic tone ) 🙄
I am a prime example of this i had covid19(not test proven) in March. I came to this site because I was am being given 5mg folic acid for a low reading. This how I ended up on this forum and recognised all the symptoms that you guys have. I m still suffering although the symptoms seem suppressed some days and other days off the chart. However I do feel things are slowly getting better. Less server
Not strictly longcovid but still associated, it appears that covid is also triggering diabetes type 1.5 in some. One of my inlaws, an otherwise healthy male in his mid 30s is currently in hospital with sudden onset diabetes which they haven't yet succeeded in controlling. He was fine until his family went into isolation after their primary school daughter's teacher tested positive for covid.
There is lots to be learnt from this - and I hope it is learnt. Lots of good comments on here. For my part, my health went into freefall after I contracted, and nearly died from, swine flu back in 2009. CFS, depression, various auto-immune stuff acknowldeged but never diagnosed... Interestingly I’ve spoken to two people over the course of this pandemic who have opened up with the exact same stories. The old research from swine flu, seemingly quickly abandoned when it was no longer current, is resurfacing again. Takes so long for people to join the dots though.
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How long before we have a national scandal 
So what IT will be in the future
What next? Feeling far worse lately even with self injecting
Don't know what to do anymore
Another study about COVID-19 and B12
