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

[Art Vandelay]

@PhysiosforME having to undo the harm caused by the BPS Cabal.

Link to twitter thread

 

[Kalliope]

I don't think this... whatever this is... deserves its own thread.


Long COVID and the importance of the doctor–patient relationship

https://bjgp.org/content/71/703/54.full

Helen Atherton, Tracy Briggs and Carolyn Chew-Graham



Unfortunately de-medicalizing chronic illness means there is no possibility of a doctor-patient relationship. It is currently hostile, based on complete control over our lives and completely deaf and indifferent to what we say or happens to us. That's not a relationship, that's abuse.

No idea what the point is of publishing that. It says nothing of value, just a bunch of words and opinions from people who have claimed this very thing as their expertise, yet somehow are allowed to pretend they also know nothing of it. If it weren't for double standards, these people would have none.

Just adding what they say in connection to ME:

There have been attempts in the media to link long COVID with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)19 or post-viral fatigue; however, this linkage has the potential to leave persistent symptoms uninvestigated and may be potentially harmful to patients.17

Certainly long COVID is currently unexplained, but organic pathology must be excluded before a plan for rehabilitation is suggested to the person living with symptoms.20

So the questions remain for GPs: ‘how am I going to differentiate long COVID from other complex symptoms?’, and ‘what resources are available for me to refer patients with long COVID to?’

There is a need to translate the NICE guidance12 into services for people with persistent symptoms.

This will require investment in UK-wide community diagnostics, access to therapies, such as physiotherapy, psychology (including Improving Access to Psychological Therapies services21), occupational therapy, and specialist rehabilitation, and organised as an integrated offer for patients.

Investment and commitment, however, is also needed by practices to ensure that we can offer continuity of care, recognising the value of the patient–doctor relationship in the delivery of high-quality, safe, care.

 

[Wonko]

Surely that's an open admission that such investigations are not, as they are supposed to, being carried out for pwME?

Even as a lowly diagnosis of exclusion it is implied that things should be looked for (excluded), and treated if found.

What the above amounts to is saying that 'things' must be excluded, and treated if found, before any comparisons between LC and ME are considered.

 

[Kalliope]

The West German public-service TV broadcaster ZDF have a six minute news segment on Covid-19 and ME with Michael Stingl, the neurologist who tweeted this.

 

[rvallee]

The Forever Disease: How Covid-19 Became a Chronic Condition

https://newrepublic.com/article/161102/covid-19-long-haulers-chronic-disease-health-care

Thousands of people have been suffering a slew of crazy postinfection syndromes for months—and there’s no end in sight.

Has an ironic quote by Greenhalgh:

We used to say TB, sarcoid, and syphilis were the three conditions that could give you just about anything

Yes, only those 3 conditions. And no other. Not even Lupus. She really started this with a major deficit of, well, everything. It's the only annoying part, the rest is good.

Medium-length so quite a read but very well researched. Compared to the usual anyway.

 

[Jonathan Edwards]

Long COVID and the importance of the doctor–patient relationship

https://bjgp.org/content/71/703/54.full

Helen Atherton, Tracy Briggs and Carolyn Chew-Graham

A truly dreadful piece.

Basically it says all sorts of self-contradictory things that take nobody anywhere but emphasises that general practice is terribly important - including claiming patent rights over Long Covid:
Management of people with long COVID is the responsibility of general practice.
I wonder what it means to find the right GP? Is that because most GPs are no good at this - and that is why they have write this editorial and show them up?

Basically it says 'Na-na na na-na, it's my ball and I say who can play'. God knows what happens to the actual patients.

 

[Michelle]

From the article in the New Republic that @rvallee mentions above:

What research exists on SARS and MERS aligns with our developing understanding of SARS-CoV-2, the virus that causes Covid-19. Three years ago, a team at the Beijing Institute of Biotechnology identified an N protein in the sequences of SARS and MERS that deploys an “unknown mechanism” to monkey wrench the body’s production of type-I interferons. These are the cellular emergency workers the body generates to stimulate the creation of proteins that block viral replication and defend healthy cells. Research suggests the virus’s impact on the interferon system, and the immune system more broadly, is the cause of the “long SARS” symptoms found in so many survivors of the 2003 outbreaks in Hong Kong and Canada. A review of the SARS recovery literature in Canadian Psychology found that as many as half of survivors reported long-term bodily pain and a general deterioration in overall physical and mental health.

Thoughts on the possibility of type-1 interferons playing a role in ME/CFS?

 

[mango]

Opinion piece by a politician in Dagens Medicin (website for healthcare professionals in Sweden), demanding better healthcare for people with long covid and ME.

Dagens Medicin: ”Vården av långtidssjuka i covid måste säkerställas”
En av två kliniker för ME/CFS lägger ned, trots att mycket tyder på att behovet kommer att öka markant efter pandemin, skriver Catarina Wahlgren (V).
https://www.dagensmedicin.se/opinion/debatt/varden-av-langtidssjuka-i-covid-maste-sakerstallas/

Google Translate, English

"Healthcare for patients with long covid must be ensured"

One of two clinics for ME/CFS is closing down, although there are many indications that the need will increase significantly after the pandemic [...]

Brain fog, fever, chronic pain and fatigue that can not be rested away. These are symptoms that those with long-term covid testify to. It is also the symptom of ME/CFS, an infection triggered disease. Now one of two clinics for this group is closing down, despite many indications that the need will increase significantly after the pandemic. I am concerned about this development.

Several of the symptoms that long-term covid patients suffer from coincide with symptoms that ME/CFS patients have. It is a group that has long struggled to receive adequate care as symptoms such as fatigue, fever and brain fog are often not taken seriously or seen as psychosomatic. [...]

This is about a group of patients who, even before the pandemic, have had to get used to being misunderstood or not believed by either the health service or the Social Insurance Agency. Although we do not know today how to cure patients or relieve them of their symptoms, there are many measures that care can take to alleviate several of the problems.

It has long been difficult for patients with ME/CFS to receive adequate care in Sweden. Many have to wait for a long time before they get a correct diagnosis, [...]

In the Left Party, we are concerned about the future if the Stockholm Region does not urgently create the conditions for receiving an increased number of patients with long-term covid and ME/CFS. There needs to be specialist centers, but there also needs to be solid knowledge at the local health centers in order to be able to quickly identify the symptoms and provide the right support and care to the patients.

 

[John Mac]

Anticipating the Wave of Long-Haulers After the Pandemic
A contested illness on the horizon: how to think about the coming surge.

Chronic fatigue syndrome, along with Chronic Lyme and Morgellons’s Disease are among a growing list of contested illnesses. If there is one thing to know about contested illnesses it is that, like contested elections, they raise hackles. Which is why, right now, we should be asking this question

With COVID Long Haul, are we witnessing the early days of the largest and most significant contested illness surge in modern history?

https://www.psychologytoday.com/us/...ting-the-wave-long-haulers-after-the-pandemic

 

[Tom Kindlon]

https://twitter.com/TomKindlon/status/1356649247131713538

The descriptions of the effects of physical, cognitive & even emotional exertion on symptoms & functioning will resonate with people with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome. Trying to do a bit more as mentioned may have its place but people need to be careful #CFS

COVID-19 clinics for ‘long haulers’ aim to treat patients stuck in limbo

https://battlefordsnow.com/2021/01/...haulers-aim-to-treat-patients-stuck-in-limbo/

 

[mango]

On TV in Sweden this morning:

Covid-19 can trigger POTS disease: "There is a huge knowledge gap"

10 min 17 sec

At Karolinska University Hospital's multidisciplinary clinic for long-term illness in covid-19, it has now been shown that covid-19 can trigger another serious disease, POTS, which among other things causes heart problems and leads to severe problems in everyday life.

39-year-old Mathilda Sundvall is one of the victims and Artur Fedorowski is an associate professor and chief physician in cardiology. They both talk about the disease, for which there is a great lack of knowledge.

TV4 Nyhetsmorgon: Covid-19 kan utlösa sjukdomen POTS: "Finns jättestor kunskapslucka"
https://www.tv4.se/klipp/va/1331814...-sjukdomen-pots-finns-jattestor-kunskapslucka

 

[rvallee]

Anticipating the Wave of Long-Haulers After the Pandemic
A contested illness on the horizon: how to think about the coming surge.



https://www.psychologytoday.com/us/...ting-the-wave-long-haulers-after-the-pandemic

Ah, yes, "anticipating" something now that it's so large it's impossible to ignore. I, too, anticipate snow when there is already more than an inch on the ground. I have a 100% hit rate with that strategy. I will even make a bold prediction here: the Covid pandemic could be a big deal. I know, I know, premature claims like this sound like pure galactic genius to mere mortals. But I will make that bold claim here and now.

It's especially notable that he writes "contested" as a passive thing while he is pretty much doing just that: setting the stage that he contests it. That's like warning about violence because you are about to dish it. Jerk.

But this:

I’m no stranger to brain fog, myself — especially the week after we change the clocks for spring forward

Ugh. Dude. No, you are definitely a stranger to brain fog, then. Fuck off.

 

[alktipping]

https://www.psychologytoday.com/us/...ting-the-wave-long-haulers-after-the-pandemic it really seems like this is some form of fifth rate rag run by idiots who are happy to publish anything written by people who have not learned even the basics when it comes to science or indeed common sense . i am always offended by the abject failure of higher education to weed out these deluded individuals who think their opinions\beliefs are more important than robust scientific processes.
" last thing we want to do is create disease where only fear exists. As with cancer screening in low-risk populations, the more the screen, the more we may find, but the less confident we are that it's real " this is the kind of statement the insurance companies love .

 

[Kalliope]

I am listening to this podcast episode now. Not sure I'll be able to make a summary, but the Canadian researcher is taking about challenges in how to perform research into rehabilitation of Long Covid patients when there are so many unknown factors. At about 20 minutes in (where I'm at now) he talks about the Chalder Fatigue Scale which led him to the PACE trial, and then about problematic aspects with this trial.

 

[Kalliope]

I am listening to this podcast episode now. Not sure I'll be able to make a summary, but the Canadian researcher is taking about challenges in how to perform research into rehabilitation of Long Covid patients when there are so many unknown factors. At about 20 minutes in (where I'm at now) he talks about the Chalder Fatigue Scale which led him to the PACE trial, and then about problematic aspects with this trial.

Had a look at the researcher on Twitter and yesterday he tweeted the following:

 

[Jonathan Edwards]

Had a look at the researcher on Twitter and yesterday he tweeted the following:

I can't quite make out what he is wanting to say. Is this a proposed project - or a funded project? What project is it? What are the four pillars, one of which is social?!

I am intrinsically sceptical about tweets about people being excited for someone else's research, or maybe plans for research...

 

[Kalliope]

I can't quite make out what he is wanting to say. Is this a proposed project - or a funded project? What project is it? What are the four pillars, one of which is social?!

I am intrinsically sceptical about tweets about people being excited for someone else's research, or maybe plans for research...

I don't know. But I recommend listening to the podcast episode linked above. Once he'd learned of problematic aspects with fatigue measures, about the PACE trial, PEM and results from patient-led research into Long Covid, he stopped his own research project.

I'm sorry, but am too foggy headed to write a proper summary..

 

[Snowdrop]

According to the CIHR website the four pillars are:

As the Government of Canada's health research investment agency, the Canadian Institutes of Health Research (CIHR) supports excellence across all four pillars of health research: biomedical; clinical; health systems services; and population health.

https://cihr-irsc.gc.ca/e/37788.html

 

[Kalliope]

I am listening to this podcast episode now. Not sure I'll be able to make a summary, but the Canadian researcher is taking about challenges in how to perform research into rehabilitation of Long Covid patients when there are so many unknown factors. At about 20 minutes in (where I'm at now) he talks about the Chalder Fatigue Scale which led him to the PACE trial, and then about problematic aspects with this trial.

The podcast is also available on YouTube. It was a great episode about listening to and cooperate with patients when researching, how important it is to make sure you're not harming trial participants, how much there is to build from the ME community, how it is crucial with more investment in research into ME. He also tells how he has adapted his planned trial on Long Covid and rehabilitation, based on everything he has learned from Long Covid patients and the ME community. He goes forward with among other #StopRestPace as principle and wants to continue raising awareness about ME.

 

[Sly Saint]

section of transcript (edited for easier reading)

my question is actually going to be more around the learning process that
has happened through this, which will be first of all applauded and celebrated not only by people living
with long covid but also by the mecfs community.
because if anybody is listening to this and doesn't know about the trauma that you mentioned by
that's been experienced by that community following the outcome and the persistent
output from the pace trial, which was around exercise or graded exercise therapy and cognitive
behavioral therapy as an intervention for myalgic encephalomyelitis or chronic fatigue syndrome,
the learning you've gone through on this journey, the the skills that you've utilized to go through this learning and reflection and reflexivity,
is that something that you are going to publish?
because that in itself is such useful informatio.
how you got to the point of where you are now because this rehabilitation has a complex history in
terms of research.
so for anyone listening i'm both
clinical and academic so i love these
academic discussions i get a little bit
excited about them
because a lot of the time academic
rehabilitation research has focused on a
model that's very biomedical
and we know that obviously
rehabilitation is not biomedical it's biopsychosocial although
that term also has challenges in the
context of other health conditions like
mecfs because of the traumas that have
been experienced and so frameworks of
rehabilitation don't always or research rehabilitation don't always
need to follow the same thing and can in fact make our own paths and that path can
include learning from the errors or mistakes or blind spots
that we weren't aware of.
and so maybe this is an incredibly leading question or maybe maybe a plea.

are you going to publish a reflection on what you've learned for this because
it could be transformative for the way that rehabilitation research
is conducted

Simon:

i'm going to tell the story
because this needs to
be known to the scientific community...

experience is experimental experience
learning from both the communities and the clinicians...
because there are clinicians all overthe world right now that are
following your leadership, the leadership of clark nichola and and michelle from
physios for me
and and we're building experiential evidence.

this is a story of worldwide patient partnership here and and it's awesome.

i am learning a lot from this, like emotionally speaking,
like i'm learning a lot and so the story is not finished.
and there are journals that are interested in these stories and there
are editors in chief that wants to publish patient voices.
But we have one paper, me and you, and that was written with patient partners
both longcovid and mecf.
this paper is important for me, it's in peer review.
the paper is about what we propose as safety measures for longcovid and me/cfs and
and we've sent it to a journal and it's peer reviewed. so once we
finish the process it will most likely be published in a journal and it will be
accessed by external reviewer and that's the way to do patient
oriented science.
there is a space in the literature for this and
it's important because if we had
been doing patient oriented research in mecfs for 40 years
perhaps we will not be at the same point
right now and that's an important message that many
people in the macfs community living with mecfs have been
saying all along haven't they;
which is if only there had been the investment in this this area of
science and healthcare we could have completely had a different story right now