Simply had to post this article. I don't think there will be many surprises here.
Long Covid: overlap emerges with ME – including debate over treatment
As more people suffer lasting symptoms from Covid including fatigue, ME patient advocates fear they will get bad advice
Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, Small agreed. “It put me in bed for several days afterwards,” she said.
In June, she returned to work as a GP, for a single half day: “It floored me completely for 10 days and took two months to get back to where I was prior to that,” she said. “I couldn’t speak one day due to the fatigue and struggled to stay hydrated as I didn’t have the energy to eat or drink.”
Before Covid, Small ran 5km at least three times a week. Now, even opening her eyes is a strain some days.
Based on current estimates, about 10% of Covid-19 patients develop lasting symptoms, one of the most common being fatigue. The underlying mechanism is still unclear, but possible explanations include reduced oxygen supply to tissues caused by heart or lung damage, or muscle weakness from prolonged bed rest.
However, some doctors are increasingly concerned about the overlap between long Covid and another largely virus-triggered illness: “It’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome,” said the US’s top public health official, Dr Anthony Fauci, in July. “They just don’t get back to normal energy or normal feeling of good health.”
well ,that's one more GP that now understands what they mean when they write "fatigue" on the notes... unfortunately , until they figure out how to help people recover from this situation , (whatever label we give it ) the ones that understand will probably remain too broken to sustain the workload of actually being GP's any longer.
But yes . long covid looks exactly like M.E/cfs from where i'm sitting.
Have just read the rest of it, still ringing some alarm bells.
'Medical professionals' still banging on about deconditioning , as though they think these previously sporty people can't tell the difference between working through recovery from becoming deconditioned, and what's happening to them now.
Contrast with GP who has actually experienced it, talking sense and saying the only thing that works is 'pacing'
I heard there are to be 40 new UK centres for long covid, but nothing yet specifically for children , however there are children getting this problem too.
I really hope they update thinking to reflect their new NICE guidance soon, and put this 'graded exercise' idea back in context and start listening to what is already known, but it looks like it will take a long time to untrain all the medics who are still being told it's the way to go.
in reference to "“Time will tell if the fatigue of long Covid is akin to the fatigue of CFS, or more akin to the fatigue of multiple sclerosis or rheumatoid arthritis,” said Elizabeth Murray, a professor of e-health and primary care at University College London."..... i'd like to know what she thinks the difference is
I would say the distinct post exertional symptom exacerbation in ME (I have had ME for many years) is often wrongly viewed as fatigue, so she could be thinking of that. If so, I am pleased that this doctor recognises the post exertional problems in ME, so many don’t.
Sounds like NTIS (non thyroid illness syndrome) where T3 fails to rise after illness.
Did you see the article about long covid symptoms described by recovering covid patients, that is what prompted me to make the connection with NTIS. (Sorry I'm unlikely to be able to find it again, though think it might have a been BBC one.)
I have had ME for many years. When I became ill I saw a private doctor (Dr Skinner) who prescribed me armour thyroid, my thyroid levels were low normal. I made some improvements, by no means full recovery, but relapsed a few years on and remain severely affected with ME. My T3 and T4 are in range, TSH slightly suppressed due to taking T4/T3 combo. For me it seems it’s possible a virus affected my thyroid but treating it only had limited effect. I know we are all different.
Me too , even though i don't think the long covid problem is as simple as NTIS, i'm hoping they might start doing fT3 tests more frequently, which would certainly be interesting research for us.
I hope the commonality between Long Covid and all the other post viral problems means that whatever is learned in the context of one virus is applicable for all the others.
However, if some specific feature related to Covid means some intervention or other helps there, but doesn't help with others, I fear there will be little or no progress for the other viruses.
Hi helvella❤️As a ME/ chronic fatigue (fibro) suffer for over 18 years I can tell you what happened to me which I think had some bearing on my diagnosis, in 2003 I was really ill bedridden to be precise it started with my felling very shaky, nauseated and dizzy I just felt like I had flu, turns out after 7to 8 weeks of my gp not knowing what was wrong, and me loosing over a stone in weight he said I had a kidney infection (wrong) I had a blood test which showed hyperparathyroidism, I had the usual wait and see approach 6wks later 2nd blood work which showed my PTH and calcium had returned to what they deemed as NORMAL levels, I was never tested again! And just told to get on with life I can tell you I lost another stone in weight as I could not stomach food I keep my liquid intake up as best I could.
I tried going back to the gym with my trainer (been doing keep fit for over 15 years at this point so was quite fit) my trainer noticed I couldn't even do a 2 min warm up I gave myself time to adapt I didn't just go hung HO back to the gym, after only 2 sessions my trainer told me to go bk to my gp.. I did and then started a year round of trips back n forth as I was getting worse, no energy, fatigue, wanted to sleep at the most silly times and server muscle and bone pain, most days just putting my leg out of the bed was like I'd run a marathon 😢 I was diagnosed at Newcastle with ME, FIBRO...in 2004..and now looking back I think the parathyroid illness played a part.. I now have no thyroid as in 2018 I was diagnosed with graves disease I always felt their was something else going on in my body after plenty of NORMAL thyroid blood tests, I eventually got the right test hyperthyroidism (graves) I'm still struggling with this even now so maby Chronic fatigue as something to do with the endocrine system too..
You just might find this somewhat old (1993) paper of some interest. Not that I am saying the same happened to you - but shows some suspicions have long existed.
Thanks for that info helvella❤️Funny enough my endo has requested a FHH test as he noted looking through my records my calcium had gone up and down on several tests(I was not informed of this and requested my records about 2 months ago and their it is in black and white,) this year I had a full blood test which showed a rise in PTH and slight rise in calcium AGAIN!!, I'm now on vitamin D and my bone scan showed ostiopea! I asked for a another blood test after 6 weeks to see what the PTH and calcium was doing now he refused the PTH test saying their was no need to do it again, but did do a calcium that came bk as normal as did my urine calcium test.. I read that you don't need both calcium and PTH to be high to determine hyperparathyroidism one or the other can be raised this will still be hyperparathyroidism,
Thank-you Helvella, very interesting, often with increased numbers things are taken more seriously so perhaps in the long run this will be good news for some people.
That still sounds a bit like they're minimising it. We've all been stuck in bed with a flu for a week or two before, so many will sympathise with that line, and think how they managed to get right back to work after...
There have been several Covid-19 patients who were in a coma for weeks, even months, and their muscles suffered severely.
But when I read about Long Covid/CFS/ME (whatever it is called from time to time, circumstance to circumstance) the descriptions are fundamentally different.
These coma patients struggle to sit up, to walk, and so on, but they do seem slowly to recover by using physiotherapy and exercise (albeit very gentle).
That's a good point, I've generally thought of long Covid as affecting people who had "mild" Covid, but forgetting those who had further interventions - although you'd expect them to have a long term need.That does still seem fundamentally different, with entirely different treatment protocols.
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