17 Comments

Thank you. I don’t think the long Covid stats are correct. I am pretty sure I have it . I was ill Feb and March of 2020 when tests were unavailable. Two weeks later symptoms began that match long Covid. The local long Covid clinic rejected me. My doctor at the time suggested I go back to work and exercise more. Any stats on non Covid post viral syndrome? Allopathic medicine ………..

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Thanks again. Continues to be so helpful. All best!

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Thank you for this very interesting update. What I keep waiting to hear of is studies that look at the commonalities between those within the 7% (pre vaccine) and 3.5% (post). My personal feeling is long term stress and or some predisposition towards insulin resistance played some role in my susceptibility to LC. Cortisol levels related to stress and insulin responses play some role from studies I've read articles on. I keep wishing someone will crack a general practical theory that will open the door to understanding measures that might protect or help those affected by LC. Which I would not wish on anyone.

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So grateful that you let us know what is happening

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Thanks for covering this. I’m curious how you’re understanding the research that has showed an increase in post-COVID/ Long COVID symptoms after multiple infections, compared to this in which previous infection was correlated with less Long COVID? I’m thinking of studies like the one I’ll share below. Is this maybe a difference in demographics? Definitions? Some other variables?

https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm

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Over 2% of vaccinated people get Long Covid in each new wave if I read correctly. Meaning Long Covid risk is still large.

The 28% reduction of Long Covid chance is due to previous infection that most had. The reduction brings the current Long Covid risk of about 3 % down to that 2% of infected vaccinated people. Avoiding Covid with say air filters & ventillating events & shops mathematically still makes sense. As we have still about 4 waves a year. What vaccine & previous infection brings down, a new infection brings up a little if my “logic” makes sense.

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I have a personal contact / anecdotal report of one long covid sufferer which despite limitations nevertheless possibly generates useful questions. In the first phase after a post-vaccination infection, early bouts of exhaustion / immobility were associated with lower blood oxygen measured on the usual home device. Down below 90% on at least one occasion. Measurement had a reasonable chance of being accurate. Might fluctuating virus or overlap with menopause be most likely 'causes', but I wonder if this could be more widely part of the symptom picture? Any work done?

Ongoing morbidity is part of the reflection on the published Covid Enquiry report and we interested public look forward to Prof Pagel and ISAGE ongoing thoughts.

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There is a different dynamic in Scotland - we didn’t get past the first round of the Euro football. Could the second peak in England be football related? Can we compare with Wales?

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ooh - very interesting point! maybe!

I don't have Wales wastewater sadly.

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By now are there solid, accepted diagnostic criteria for Long Covid ? I don't deny that Long Covid is an issue, but I've seen decreased smell/taste as a diagnostic sign for it, and I worry that this relatively minor problem is pushing up the incidence numbers significantly.

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There are diagnostic criteria - but there is a large range of severity.

There is also loads of peer reviewed research showing clear biomarkers for Long Covid.

There is a review coming out very soon on all of this by Prof Trish Greenhalgh - watch out for it!

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Hi Christina - thanks for summarising this latest research! Much appreciated. Its an important issue that is affecting so many people.

We published a paper this week which measures for the first time - menopause symptom prevalence in females in 3 Long COVID clinics in England. This simple paper is a quick temperature of the room check of how prevalent possible symptoms of peri/menopause are in women attending Long COVID clinics which should contribute to the discussion of the important overlap in symptoms between peri/menopause and Long COVID - creating an opportunity for treating co-existing symptoms. https://regions.ijidonline.org/article/S2772-7076(24)00076-6/fulltext

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Just skimmed the paper. Genuine question (not a medic), why it is a problem if some women have undiagnosed perimenopause in a LC clinic? I'd hate to see people sidelined with the idea that new health issues are perimenopause when actually there is a new-onset condition caused by LC. In my experience of attending a LC clinic, the women were advised to explore the idea that some of the symptoms were menopausal. In fact, a disproportionate amount of time was spent on it, which felt a bit like the narrative you get from some GPs "you think you have long covid, but you're wrong". Regardless of confirmed menopause or not, the women in the clinic were adamant that covid infection had caused the new, unresolved, sequalae.

Surely chucking in a test for FSH (and other markers of hormone dysfunction, cortisol?) would allow you to better define if the symptoms are caused by a mechanism independent age related menopause vs covid pathophysiology. Cheap and quick tests as well. In fact, better blood panels and proper interpretation all round would help a lot of LC sufferers. I'm sure the Putrino lab recently published blood marker paper recently that would be of use in defining the sub-set(s) of LC.

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Hi Jason,

Thank you for taking a look at the paper and your thoughts.

We wrote this paper simply to measure how prevalent menopause symptoms were in women attending LC clinics as there is significant overlap between some of the symptoms from both peri/menopause and LC. This hasn't been explored yet. In this study, we were not looking at what caused what.

Prior to this study, clinically we were seeing some women being referred to LC clinics where the referring clinician had not considered a diagnosis of peri/menopause prior to referral despite there being clear evidence for this. It was being sidelined but the other way around - being told it was all LC and not peri/menopause. Both experiences have happened to patients and both are not right. This is important because approaches (all LC versus all peri/menopause) miss opportunities to address the significant morbidity associated with both conditions. Also, by saying peri/menopause may not have been considered prior to referral, does not mean we are saying that the patient does not also have LC. We agree both can and do occur. An important point is that if some women are clearly peri/menopausal as well having a diagnosis of LC, it is incredibly important to consider how both conditions can be managed especially when we have good treatment options for peri/menopause. Doing so may help disentangle the overlapping symptomatology. Finally, blood tests to diagnose peri/menopause are not often needed - we diagnose it clinically.

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Thanks for that message about long covid. I am one of the 400K who has had a life changing version of it. I have had to take early retirement and limit my involvement in many activities which worsen my fatigue. So far I've had it for 22 months but improvements have been quite small in that time.

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Sorry to hear that Nicholas, I hope advances can be made that help you. That cannot be easy to live with.

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Thank you Des. I find it unsettling to think that many more people are likely to share my fate as we move forward - people who are currently unaware of the risk of LC. We rely on people like Christina Pagel to inform and update us, and I am very grateful to her, but in my mind a government public health agency should be doing this.

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