• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

UK long Covid cases hit record high of 2 million

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Yeah 2 in the UK. Next year I predict 2 to 4 based on severity of transmission. Probably 4 becuase the new variants are 15 to 20% more transmissible.

Year after that if things continue that could mean 6 million with long covid.

Economic burden aside it means we will get more of the spotlight. Which is vitally important for us to get anywhere at all.
 

BrightCandle

Senior Member
Messages
1,152
Yeah 2 in the UK. Next year I predict 2 to 4 based on severity of transmission. Probably 4 becuase the new variants are 15 to 20% more transmissible.

I see no reason why it will stop. Everyones immune system seems to be showing increasing problems and these weird responses to other diseases do make me think the production of post viral sufferers is likely to continue. A couple more million seems fairly likely. There are only 39 million working age adults in the Uk at all, the prospect of 4 million, 10%, not able to work is going to be impressive. I do wonder how long the NHS can keep up the charade that this isn't real and doing nothing to diagnose patients, even the health secretary is getting fed up with it since he has a niece with ME/CFS now. Its rapidly getting to the point where everyone knows someone with this condition.

This is a mass disabling event by the looks of things. Big losses in capabilities and IQ and immune dysfunction. The death count is going to be awful but the lasting disability and suffering will be enormous.
 

Hip

Senior Member
Messages
17,857
Here is the original ONS report.

Their definition of long COVID appears to be certain ongoing symptoms after COVID. This definition does not necessarily correspond to the ME/CFS form of long COVID, unless the symptoms you have satisfy one of the diagnostic criteria for ME/CFS. For example, if you just have ongoing headaches, then that's not ME/CFS.

Also, even if you satisfy ME/CFS criteria, some long COVID patients recover after 6 months or so, thus this would be more like post-viral fatigue rather than long-term ME/CFS.

Here are the questions that ONS asked survey participants:

1654094981960.png



In a poll I ran in one of the long COVID Facebook groups asking long COVID patients whether they have the ME/CFS form of long COVID, or just other forms, the poll results indicated that:

Types of Long COVID:

46% had ME/CFS-like long COVID
20% had dysautonomia (such as POTS, NMH, temperature intolerance, etc)
13% had post-viral fatigue which had improved by at least 50% over time
6% had heart and lung damage that had improved by at least 50% over time
3% had heart and lung damage that had not improved over time
1% had silent hypoxia (where blood oxygen saturation level go down to as low as 80%)

130 long COVID patients voted in the poll.
(Figures updated on 26 June 2022).

So this suggests that if there are 2 million in the UK with long COVID by the ONS questionnaire, then about 50% of those, ie 1 million, will have the ME/CFS form of long COVID.

That still quite a lot of people with ME/CFS long COVID, since before the pandemic, there were only around 130,000 ME/CFS patients in the UK.


At present, around 80% of the UK population have previously caught COVID, so that's 80% x 68 million = 54 million people in the UK who have been infected. And 1 million of those developed long COVID ME/CFS.

That means if you catch COVID, your chances of developing the ME/CFS form of long COVID form is roughly about 1 in 50.
 
Last edited:

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Good detective work Hip!

So the number is lower then. I guess that makes sense. Hopefully the sensationalist aspects of the news articles will still grab the right attention. Sadly the numbers are still too low but maybe next year they will pay more attention. I can't help but be cynical.
 

Treeman

Senior Member
Messages
790
Location
York, England
My wife has long covid / ME/CFS diagnosed by an NHS provider. However, she hasn't yet been seen for treatment mainly because there is no "special" clinic to see her. She has been on waiting lists since October to be sent for tests. The NHS is on its knees, how can they suddenly make appear a special unit for 2 million more patients?

Whilst I hope something happens for them (and potentially me/CFS patients) I just can't see it
 
Last edited by a moderator: