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

I'm not thinking of anything specific. More a case of having longitudinal samples stored to compare those who recover early with those who don't.

 

All this sounds eerily familiar. And the medical profession seems to be funnelling people into unproductive psychological counselling etc.

I wonder how long they'll be able to continue to deny the existence of ME/CFS for now that we're apparently facing a new tidal wave of cases.

https://www.haaretz.com/israel-news...life-is-still-hell-two-months-later-1.8983733

 

https://twitter.com/user/status/1282586702377299969


I haven't listened to it so far, but here's a public post from Facebook:

Joan Mcparland

 

Do better. Do 100x better than this.

 

https://meassociation.org.uk/2020/0...t-on-graded-exercise-for-post-covid-syndrome/

 

I am awaiting the statement from BPS lobby that the term 'long haul covid' is medically inaccurate, as none of these people are any longer than they were previously, few have hauled anything that can be proven in standard medical tests, and that the standard widely used covid tests have not been properly evaluated by questionnaires designed to prove everything is psychological.

 

This was excellent.

Paul Garner talks about post covid for half an hour.
He tells his story, describes a fluctuation of symptoms, brain fog. That doing too much results into "an echo of the original infection".

He goes on to say:

It's actually quite complicated to negotiate this viral fatigue. You have to have some insight into it. Because it isn't like an hour later, it's a day or a day and a half later.
You have to record all your patterns of activity, to try and work out what's going on, and it does bring back old symptoms.

The literature that I'm finding very useful is the chronic fatigue/ME literature, although I'm not in that stage in terms of timelines and so on.

It's much more useful than much of the medical literature about this, all the self help groups about pacing.
It's really, really helpful and the people that have been most useful to me have been people that have ME. Who are very kind, and they help me learn that I will make mistakes with this pacing. They help me be forgiving and they help me understand that you have to just reduce your expectations of how you spend your day.

He believes post covid is a spectrum and that GPs are catching up fast even though post viral issues have been poorly understood in the past. This is not a confrontation, but an opportunity to take seriously some of the symptoms and the problems to people who have chronic fatigue and post viral syndromes.

He also mentions the NICE guidelines about increasing exercise and describes it as completely inappropriate for him.

He talks about being in a privileged position, as he's able to not work at the moment, and that there are many, many people without such privileges.

 

I interviewed Canadian long COVID patient Chandra Pasma - her husband has had ME for 15 years, so she knew what (not) to expect from health care and is leading the long COVID advocacy charge...

https://medicalerrorinterviews.podbean.com

 

Frustrating comments about post viral syndrome on Irish national radio

<https://www.rte.ie/radio1/today-wit...nday-13-july-2020/?clipid=103450795#103450795>
---
17:33
Dr.Hadi Manji:

So no warnings about the risks from exercise, nor that some people end
up with long-term conditions such as ME and CFS after post viral
syndrome.


https://twitter.com/user/status/1282763653062758400

https://twitter.com/user/status/1282765804996628480

 

I hope he does not hurt himself doing those. He's doing a lot of awareness and it must be exhausting. Although I certainly understand the feeling of urgency, of knowing that others will hurt themselves until proper guidance finds its way, with things moving too slowly for those who are sick now and need early advice ASAP.

Especially with stuff like that:
https://twitter.com/user/status/1282763653062758400


But this is an incredible moment, as if a bad timeline was created some 3 decades ago and the good timeline is reasserting itself. I am so ready for some good in this badly neglected space, for myself but also knowing that others have it so much worse makes it a moral imperative.

 

my bolding you do make me laugh so much sometimes @Wonko

 

Spot on.

 

From a major German news outlet, Spiegel (Translation deepl); it links to an older, pretty well written article on ME, too.

"In addition, researchers assume that in individual cases viral infections can trigger a so-called chronic fatigue syndrome, in which a misdirected immune response can lead to constant exhaustion, persistent pain, lack of concentration and other serious complaints. It is conceivable that this disease can also occur as a complication of a sars-CoV-2 infection."

 

The Swedish news site on medicine "Dagens Medicin" writes today that long-term illness with covid symptoms now will be registered.

Many people who are ill long term with covid-19 symptoms say that they have been denied care and met with disbelief. Now the National Board of Health and Welfare, together with the Swedish Agency for Medical Evaluation (SBU), has been commissioned by the government to map the long-term sick.

....
Thomas Lindén says that there are knowledge gaps when it comes to long-term patients with covid-19 symptoms, who are not so ill that they need hospital care but can still be ill for several months. Already eight to ten weeks ago, the National Board of Health and Welfare looked at the state of knowledge for this group, but then stated that there was not enough knowledge.

Långtidssjuka med covidsymtom kartläggs
google translation: Long-term illness with covid symptoms is mapped

 

Tweet by Karl Lauterbach (famous German politician and prof. of health economics and epidemiology) about this article https://en.wikipedia.org/wiki/Karl_Lauterbach

https://twitter.com/user/status/1282787794373550080

 

Is there an Irish equivalent to NICE @Tom Kindlon? The HSE or above?

Are there any written guidelines for treatment for ME? I'm wondering if there's someone who could be lobbied for an interim type statement like the one fro. NICE recently.

 

There is this HSE working group:
http://meadvocatesireland.blogspot.com/2019/05/update-on-hse-working-group-on-me.html

 

Just a mention of a Canadian article on a science journalist in BC who has long covid. The piece is written by someone who doesn't seem to understand that there is no good treatment available, believing that:

There is no real medical management support and there is still issues with being believed. Also, there always has to be mental health support included in a knee jerk fashion whether it's needed or not.

Perhaps someone who is able might want to connect with the journalist (either the one who is sick or the one doing the write up) with some better information.

https://www.cbc.ca/radio/thecurrent...pe-with-disease-s-long-haul-effects-1.5647886

 

It was reported a few months ago that one of the main anchors at CNN, Chris Cuomo, contracted COVID. He has since covered the long-term symptoms a bit, as he does himself still have brain fog and he says depression without sadness, which probably came from a GP who thought of chronic fatigue but sees it as depression, my guess as the definition of atypical depression is basically chronic fatigue without PEM. He says he can't train as well as he used to, either. If anyone has ever seen him shirtless, the dude definitely lifts.

He had a segment a few weeks ago with a mother whose entire family of 6 was sick and 4 of them still have symptoms, two of them severe enough to be disabling, though more on the mild-moderate end. Tonight he had another segment with her along with CNN's medical correspondent Sanjay Gupta, who was pretty sympathetic and has a good reputation as TV doctors go.

The segment didn't go into details but he mentioned ME, aka the fancy name for CFS. He seems to want to dig into this and is frankly likely to do some reports on it. He said he'd bring both of them back to talk about it in the near future. His show is pretty high profile so reaches a lot of people. So this is nice.

But also significant is that he is the brother of NY's governor. I'm pretty sure this is something they'll talk about. Andrew Cuomo was pretty visible in the early days of the crisis, when NY was at its worst, and held daily briefings and conferences talking about it. If he talks about it would reach a whole lot of people, including in government.

https://twitter.com/user/status/1283217998912905216

 

Yep. Nothing against mental health support where it's needed or wanted but where it isn't needed or wanted it can often just place an extra burden on the patient.

They never seem to figure out that time, energy and resources spent this way might be more productively spent elsewhere. Even if that time is spent just resting.