News about Long Covid including its relationship to ME/CFS 2020 to 2021

Dr Nisreen Alwan is an Associate Professor Consultant in Public Health and Epidemiologist - not a GP:

https://www.southampton.ac.uk/medicine/about/staff/naa1f14.page

 

Her epidemiological interests are said to relate to

the area of maternal and child health. I attempt to address research questions around how to optimise the health and well being of women before and during pregnancy leading to better long-term health for them and their children.

and may not give any broader understanding of the issues.

 

In an ideal world, someone with this level of training should be able to identify the symptoms of ME.

If she can't, she shouldn't be lecturing us plebs "in the back" about the illness many of us have lived with for decades.

 

Dr. Nasreen Alwan elaborates a bit more what symptoms people with long covid are experiencing in the BBC radio programme "Long Covid" with Adam Rutherford.

She says she got ill in March and that it continued with fluctuating symptoms. She then got aware of others like her. She's asked what the range of the long term symptoms being seen are and says:

The range is huge. Fatigue and tiredness seems like a common thread, although the extent of it is hugely variable as well. But the other symptoms vary from cardiac symptoms, including chest heaviness. We’re not sure really if it’s respiratory or if it's cardiac or if it's muscular in origin. But also there’s widespread muscle ache….

Palpitations seems to be common. Cognitive problems. What people are describing as brain fog. Problems with memory or feeling pins and needles. And muscle aches or leg pains. Joint pain seems to be a common thread. Any they really range in term of severity. Some people just can’t go back to doing any of their daily activities at all that they used to do before. Just going up the stairs. The stairs seems to be a common thread.

(From the first minutes of the programme)

 

No, that doesn’t sound like ME/CFS, not at all.

 

Has anyone stumbled over "tender lymphnodes" yet in longcovid?

Since that is very common in ME...

 

Still listening to the programme.
A bit further on she actually talks about crashing. Huh..

There's also a doctor which I didn't catch the name of that mentions chronic fatigue syndrome, boom and bust cycle, and advices the journalist (also a long term covid sufferer) to reserve his energy so that this doesn't develop into something chronic.

Sorry, not the best summary of this programme. It was interesting to listen to, though, and it also speaks to some researchers.

 

Good question. I also wonder if anyone has done cardiopulmonary testing over two days yet with long covid patients.

 

I think I saw “lymphadenopathy” at one stage.

 

Wait, is she describing ME or longcovid?

 

Like I said somewhere else, perhaps six months, when the brain is befuddled and befogged, is too short a time to appraise oneself of the details of ME. Still, that needn't prevent one giving an expert opinion.

 

https://twitter.com/user/status/1311277830634975233

 

https://twitter.com/user/status/1311026575639445505

 

Months ago I wrote to Dr Nisreen Alwanan with some information and told her that Prof Stephen Holgate ( also based at Southampton) is chair of CMRC.


Anecdotes on Twitter that some LongCovid who have made progress ,are relapsing with autumn viruses. Sounds familiar.


I know that ME doctors talked about trying to connect with LongCovid groups, but one of them met a lot of denial (Multiple reasons probably)

 

I didn't quite understand that tweet..

 

My reading of it is that the person who tweeted understood the doctor on the radio programme to be supporting the deconditioning theory of how ME develops.

 

ah. I understood the doctor differently. He was concerned about this turning into something chronic, as that is more difficult for doctors to "untangle", but I did not get the impression that he meant it came down to lack of exercise. It did seem to me that this doctor had understood some basic key aspects.

 

The video is so eerily reminiscent of my experience. The women at the end says that she doesn't like telling people how she's feeling on any particular day because she doesn't want to disappoint herself or others when they ask how she's doing. I eventually stopped telling everyone how I felt because they wanted me to get better . . . soon.