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

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Colin said:

I found this report, by Linda Mottram, this morning, particularly interesting as it was quite unabashed in putting chronic, post-CoVid-19 symptoms in the same basket as ME/CFS. So far the rule, by the ABC and politicians in Australia, has been to use avoidance language, even when it was quite obvious that they must have been aware of the many similarities. The premier of Victoria, for instance, used "post-viral fatigue" at one of his daily, media conferences. And the ABC's flagship, tv, current-affairs program, "7.30", has, by and large, avoided the obvious. Rarely, it has slipped through, such as in this report in May that also featured Professor Garner:

Coronavirus patients with even mild cases of COVID-19 are taking months to recover and suffering extreme fatigue

In it the Professor was quoted as saying: "It gives you some of the symptoms that are very similar to chronic fatigue but I am hesitant about calling it that," he said. But no context was given for that term and the average listener would have had no clue what he was referring to.

A more typical example is this recent report from "7.30", on 17 September:

Long-term health consequences of COVID-19 becoming clearer

In it, not even the word "fatigue" is used. While it might be that the particular cases featured did mostly have symptoms peculiar to the lung and heart damage, the pattern of reporting for the last six months has been to avoid, avoid, avoid. And they did that very thoroughly here even though they did admit that one of the patients had "brain fog".

But now there appears to have been a shift in policy. A day ago there was this report by Olivia Willis on the ABC's website:

When looking at impact of coronavirus, we can't forget the long-term health effects

In it she wrote: "Self-described as COVID-19 "long haulers", some patients describe debilitating fatigue, difficulty exercising, and general "brain fog" months after their infection has cleared. Dr Short said post-viral fatigue is seen in other viral infections too. "We know that Epstein-Barr virus, which causes glandular fever, has also been linked to chronic fatigue syndrome," she said."

That might sound like pretty standard stuff but even that was unusual. And now the Saturday "A.M." program devoted almost 19 minutes of the 25-minute program to this one report. Amongst much candid discussion of the similarities was this from Julian Elliot, chair of Australia’s National COVID-19 Clinical Evidence Taskforce (starting 6:50m):

"I think one of the most important things is that people recognize prolonged symptoms, after the acute phase of CoVID, is a reality. It does occur and it's extremely important that health-care professionals—and, in fact, people generally in society—are aware of this and support people during this time. As we've seen in the past with chronic-fatigue syndromes and other post-infective fatigue and other syndromes, one of the most debilitating aspects can be when people are not believed."

For any major, media outlet in Australia, that is an extra-ordinary statement and I am quite encouraged by it.



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I have now highlighted that quote elsewhere:

 
Tom Kindlon said:
I have now highlighted that quote elsewhere:

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That "in the past" line does not inspire confidence things will change any time soon. Bit like saying we had problems with pandemics in the past. True. But we very much have those problems right now.

It's not just the "now" but especially the "ongoing" aspect that is the concern here. The state of discrimination against ME, and chronic illness in general, is still very much maximal, at its very worst, thanks to the rotten BPS/MUS/FND ideology. This is not going away until the failure is acknowledged, fixed and the entire system of health care reformed to make sure this never happens again. That will require making a lot of people very angry, and some to be very retired. It will require actions, decisions and actual plans with actual funding.

Hope is not a plan. Never is. We can testify to the fact that no matter how much time you allow for wishful thinking to magically produce results, it never will.
 
Merged thread

As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

This is a journalistic piece regarding Long COVID which discusses symptoms and experiences of patients living with Long-COVID including Dr Mady Hornig who researches ME as well.

New York–based psychiatrist Mady Hornig, MD, a member of Columbia University Medical Center’s epidemiology faculty, has long studied the role of microbial, immune, and toxic factors in the development of brain conditions such as ME/CFS, whose etiology and pathogenesis are unknown. Now she’s looking at these relationships not only as a physician and scientist but also as a long hauler.

Hornig wrote off a throat tickle and cough in March as allergies. And she assumed that walking around her home shoeless caused the chilblains that later developed on her toes. It wasn’t until a 4 am fever awoke her on April 24 that she suspected she had contracted COVID-19. Although she takes 650 mg of aspirin daily for another condition, the fever persisted for 12 days, a longer stretch than any she had experienced since she had her tonsils removed at age 14, nearly 50 years ago.

Despite all the indicators, Hornig’s April 27 nasal swab test was negative for SARS-CoV-2. That’s likely because it was performed either too soon or too late—depending on whether the late April fever or the earlier cough or “COVID toes” were the first sign.

Her doctors told her they didn’t have a better explanation than COVID-19 for her symptoms, which have also included oxygen saturation levels as low as 88% and 8- to 10-minute tachycardia episodes that still send her heart rate to 115 to 135 beats per minute at least once a day and leave her breathless, even if she’s sitting down. Before COVID-19, Hornig was used to working 12- to 14-hour days. For weeks after becoming ill, tachycardia would leave her so fatigued that “I felt like I could not do anything further—my brain was just empty,” she said in an interview
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The article also includes the issue of medical gaslighting.

Do not miss the comments at the bottom from physicians, one of which is VERY good but a few are really bad as well.

Dr Hornig if you are reading this, i am sending my best wishes.




Link to article
 
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John Mac said:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – An Update
By Axel F. Sigurdsson, MD, PhD | September 26, 2020

Chronic fatigue syndrome (CFS), also termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness that has attracted a good deal of attention lately, mainly because of a proposed relationship with COVID -19.

https://www.docsopinion.com/myalgic-encephalomyelitis-chronic-fatigue-syndrome
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Not half bad. It's missing out a lot of the disease burden and overemphasizes excessive exercise as a trigger for PEM, missing out essentially on the severe half of the patient population who struggle with daily functioning, not even close to be able to even attempt vigorous exercise.

The section on treatment is bad, but in line with current research so not too much to complain. A bit too much emphasis on "high-functioning individuals". Thing is, people who aren't high-functioning don't mention it. I don't think so much should be made of this other than as a significant factor in pushing through the disease.

Should be better. Could be much worse. But it stays mostly within reality, which is nice.
 
Haven't bothered watching. Some comments that the predictable stuff about anxiety and CBT/GET is there. I'm not expecting the RSM to do anything good so not surprising. Doubtful there's anything worth much here.

 
Meanwhile in "stuff pwME have been saying literally for years and has fallen entirely on deaf ears":



Rejecting reality and substituting your own is not serious work. The obsessive focus on fatigue has never made logical sense. Magical thinking is incompatible with science, part 2926296.
 
Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502253/

Coronavirus disease (COVID-19) is a novel highly contagious infectious disease caused by the coronavirus SARS-CoV2. The virus affects the human respiratory and other systems, and presents mostly as acute respiratory syndrome with fever, fatigue, dry cough, myalgia and dyspnea. The clinical manifestations vary from no symptoms to multiple organ failure. Majority of patients fully recover. Several postinfectious presumably autoimmune complications of COVID-19 affecting the brain or peripheral large nerve fibers have been reported. This report describes a post COVID-19 patient who developed chronic fatigue, orthostatic dizziness and brain fog consistent with orthostatic hypoperfusion syndrome (OCHOS), a form of orthostatic intolerance, and painful small fiber neuropathy (SFN). Initially, the patient was diagnosed with.

OCHOS (detected by the tilt test with transcranial Doppler monitoring) and SFN (confirmed by skin biopsy), and both OCHOS/SFN were attributed to Post Treatment Lyme Disease Syndrome of presumed autoimmune etiology. Patient recovered on symptomatic therapy. COVID-19 triggered exacerbation of OCHOS/SFN responded to immunotherapy with intravenous immunoglobulins. This case suggests that post COVID-19 syndrome may present as an autoimmune OCHOS/SFN and that early immunotherapy may be effective. Further studies are necessary to confirm the link between OCHOS/SFN and COVID-19 disease as well as to confirm the benefit of immunotherapy.
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Case report but nonetheless interesting.

Thread for this paper is here:
Post Covid-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy, 2020, Novak
 
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Not sure what place this publication in terms of journalism has but people talking about it is probably a good thing no matter what. Front page. Decades ago I think ME/CFS made the front page of Newsweek because of the Lake Tahoe outbreak. How much could have been done if the sabotage hadn't happen? It's maddening to think of the millions of lives lost to this.

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'I had to leave the nursing job I love because of long-Covid'

https://www.telegraph.co.uk/health-fitness/mind/had-leave-nursing-job-love-long-covid/

A new study has found some sufferers can suffer from lingering brain fog, and find it more difficult to find their words or even concentrate on tasks. This can lead to frustration and poor sleeping patterns too, adds Dr Heightman, which "in many ways is extremely similar to chronic fatigue syndrome."
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“The uncertainty is very hard to navigate and with little support, so you are left feeling incredibly alone. I am suffering with what I now know to be chronic fatigue syndrome and it is making everyday life very hard. I cannot complete simple tasks like food shopping, due to memory loss and brain fog, and I don't have the energy on some days to move. There is no indication as to whether this is something I have to live with for a short while or for the rest of my life.”
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From the PACE trial manual: "The essence of CBT is helping the participant to change their interpretation of symptoms and associated fear, symptom focussing and avoidance. Participants are encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology. In this way it is anticipated that they will gain more control of their lives, as they, and not their symptoms, dictate what they do."

Therapist and Counselling Directory member Dr Jackie Sewell has acknowledged that anxiety and depression are probably the two main mental health impacts of the virus. “The longer the symptoms persist, or the cycle of recovery and relapse continues, the more helpless and hopeless they [sufferers] may feel about the future and this can lead to depression.
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"The bastards just don't want get better"
If 'long Covid' sufferers solely focus on their recovery, it may not be the healthiest approach to take. “These individuals need to focus on managing and living with a condition that may turn out to be a chronic illness,” Sewell says.

“The focus should be on each day, trying to achieve small tasks but pacing oneself and not beating yourself up if you have setbacks.” Healthy eating and regular sleep can also be beneficial.
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Weird how the exact opposite was argued endless for decades. How odd.

A reminder how the alternative claims were made as part of the bullying through of the BPS model:


Richard Horton: We were delighted to get this trial, it was eagerly awaited. It was a remarkable study because the investigators stepped back and were willing to do an experiment comparing conventional treatments for chronic fatigue, cognitive behavioural therapy for example against a treatment which was very much endorsed by parts of the patient community but very sceptically received by the more scientific community and that was the adaptive pacing therapy. So they were really stepping back and comparing two philosophies, not just two treatments, two philosophies of what chronic fatigue syndrome was.

Norman Swan: In other words whether or not you can be rehabilitated to some extent and whether or not you should actually just adapt to the condition.

Richard Horton: Yeah, I mean adaptive pacing therapy essentially believes that chronic fatigue is an organic disease which is not reversible by changes in behaviour. Whereas cognitive behaviour therapy obviously believes that chronic fatigue is entirely reversible and these two philosophies are kind of facing off against one another in the patient community and what these scientists were trying to do is to say well, let’s see, which one is right.​
 
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I’ve not kept up with this thread recently so apologies is this has already been posted:

BBC Radio 4, 11am Tuesday, 29 September: Long Covid, presented by Adam Rutherford:
https://www.bbc.co.uk/programmes/m000mzms

BBC Blurb:
After coming down with covid six months ago, Inside Science presenter Adam Rutherford is only now starting to feel back to his normal self. He didn’t go to hospital and, like many, thought he’d be back on his feet in a week or two. But his symptoms of fatigue and shortness of breath have taken months to subside.

One of the most striking aspects of the disease is the stark differences in people’s experiences. Why do some people recover quickly, while others battle with distressing and long-lasting symptoms? And why are those symptoms so varied and changing - from fatigue and muscle aches, to blood clots and kidney failure?

What are the underlying mechanisms that might explain what’s going on? What is it about the virus SARS-CoV-2, and the immune response it triggers, that might explain such widespread and long-lasting destruction in the body? Could there be several sub-types of the disease?

Adam explores the emerging science behind what’s come to be known as ‘long covid’ and the investigations underway to help those living with the symptoms.

PRESENTER: Adam Rutherford
PRODUCER: Beth Eastwood
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One of my concerns about linking long-covid with ME, is that it may be that most people will slowly recover from these symptoms within a few months, as many people with persistent post-viral symptoms do, and as Adam appears to have done. If that is the case then it may be quite different from ME/CFS and therefore unhelpful to link them.

I appreciate that others may feel differently about their experiences but, even though I was given some very bad advice in the first couple of years I was unwell, I still think it’s unlikely I would have recovered if I had been given the best advice. If I had the type of illness where I felt well if I rested sufficiently and only felt unwell if I did too much then I might well feel differently, but since I’ve became unwell in 1992 I have felt absolutely rotten every day, and it’s never felt like resting and pacing is going to make me better – only to feel less awful.

If the natural course of long-covid is a slow gradual recovery then I fear that many long-haulers, including scientists and doctors, may be inclined to falsely attribute their natural recovery to whatever they have tried – whether that is CBT, GET, pacing, anti-virals, reflexology or healing crystals – and infer that a similar approach should work for ME/CFS. That could be really unhelpful for us. [edit to add: I’m not suggesting that promoting pacing is unhelpful. I just think it’s unhelpful if people think of it as a treatment rather than just a sensible approach to management, which may aid recovery if that is the natural course.]

It will be interesting to see who is on this programme and what is said. I suspect we may end up with a lot of muddled thinking and blurred definitions (eg SW claiming on Twitter that “‘pushing through’ is not part of GET”) similar to the webinar with Miller and Chew-Graham in the RSM long-covid webinar.




 
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On the question of "pushing through", or not, I seem to recall looking to see what was said at the outset. I could not find any references, as such, to pushing through, but what was indicated was that periods of rest should be built into the schedule or timetable and that rest should only be taken at those times.

The implication of that is clearly that symptoms should be ignored until the timetable allows for rest. That might reasonably be interpreted as "pushing through".
 
Robert 1973 said:
I appreciate that others may feel differently about their experiences but, even though I was given some very bad advice in the first couple of years I was unwell, I still think it’s unlikely I would have recovered if I had been given the best advice. If I had the type of illness where I felt well if I rested sufficiently and only felt unwell if I did too much then I might well feel differently, but since I’ve became unwell in 1992 I have felt absolutely rotten every day, and it’s never felt like resting and pacing is going to make me better – only to feel less awful.
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I feel like this too. I have never had a single hour where I have felt 'well' since I first had the symptoms of M.E. (mine also began in 1992). I have never been pressured to undertake either GET or 'CFS style' CBT, although over the years I have tried to do a lot more than I should have, most often out of necessity as a single parent without family support.
 
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Source: Psychology Today
Date: September 26, 2020
Author: Emily Deans
URL:
https://www.psychologytoday.com/ca/...2009/mental-health-effects-covid-19-infection

Mental health effects of COVID-19 infection
-------------------------------------------
The purported respiratory infection can have profound effects on the
brain.

After nine months of living in a pandemic of the respiratory infection,
COVID-19, we know a lot about the multi-systemic effects of SARS-CoV-2,
the virus that causes it. In most people, it acts like a regular old
common cold, but some get severe illness and other complications such as
pneumonia, heart inflammation, blood clotting problems (that can lead to
strokes, ischemic limbs, or even disseminated bleeding), COVID toes, and
other multi-system inflammatory disorders. Not surprisingly, this
illness can also affect the brain.

People very ill hospitalized with COVID-19 are at high risk of
developing delirium, a disorder characterized by fluctuating attention
and disorientation, emotional extremes, agitation, paranoia, or
sometimes the opposite, a very flat emotional expression, and
hallucinations. The sleep-wake cycle is usually disrupted, and the
delirium classically gets worse as the day progresses.

(...)

A psychiatrist, Dr. Mady Hornig, who studied myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) at Columbia, was
left with chronic fatigue herself after a presumed COVID-19 infection in
March. For weeks after becoming ill, she was often so tired 'I felt like
I could not do anything further-my brain was just empty.' She has
designed studies and, using NIH and non-profit funding, developed a
registry to follow and better understand these symptoms in the wake of
the pandemic.

(...)
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