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

[leokitten]

Saying they should not be conflated is not the same as saying it's "either/or." Many people with post-Covid are clearly having symptoms related to specific organ damage that are not seen in ME, at least not that I've ever heard. That doesn't mean they can't have ME as well. But ME won't capture much of what is wrong in long-Covid, I'd guess.

Why would someone with shortness of breath because of lung-scarring or who has a stroke because of blood-clotting issues be said to have ME? How would that help people with ME and people who have lung-scarring post-Covid?

Maybe I misunderstood Tuller’s language. What I meant is that many of these people might have COVID long-term symptoms and damage and ME/CFS, just like people with ME/CFS can have other comorbidities.

What I interpreted from Tuller’s words is don’t say these people have ME, well many might have it on top of what else they have, so it’s disingenuous to say the don’t have ME. People can have multiple related diseases.

 

[Esther12]

If you click on Alexandra Elbakyan (she created Sci-Hub) it will open a second window and the first window will revert back to just the research study you want to view.

Thank you!

 

[leokitten]

Saying they should not be conflated is not the same as saying it's "either/or." Many people with post-Covid are clearly having symptoms related to specific organ damage that are not seen in ME, at least not that I've ever heard. That doesn't mean they can't have ME as well. But ME won't capture much of what is wrong in long-Covid, I'd guess.

Why would someone with shortness of breath because of lung-scarring or who has a stroke because of blood-clotting issues be said to have ME? How would that help people with ME and people who have lung-scarring post-Covid?

We do not know what happened to people with SARS and the long-term damage from it along with getting ME/CFS. The infections were in Asia and once SARS disappeared research funding dried up. So in the West we just don’t really know what happened. So this could’ve happened already with SARS which is 80% identical to COVID.

 

[Jonathan Edwards]

Kate Kelland continues her social distancing from ME while writing on long-covid sufferers. Predictably she quotes all the sources that are worse than useless:

What I find so odd is that anyone should take R M-M seriously when she so obviously is unqualified to say anything meaningful, just by the way she talks about things. She talks just like a homeopath.

 

[Jonathan Edwards]

What I interpreted from Tuller’s words is don’t say these people have ME, well many might have it on top of what else they have, so it’s disingenuous to say the don’t have ME. People can have multiple related diseases.

I think that is exactly the point David was making himself.

 

[Jonathan Edwards]

Or maybe they were improving anyway.

No, they must have been improving anyway - in order to have done the exercises![/QUOTE]

 

[Hoopoe]

Graded exercise is a good way to have patients who are unwell to stop coming. To the doctor this would appear as trend of patients getting better and doing GET.

 

[Dr Carrot]

Graded exercise is a good way to have patients who are unwell to stop coming. To the doctor this would appear as trend of patients getting better and doing GET.

I’ve thought about this so often in the past. How many of us got a brief follow up to ask why we’d stopped going to the doctors? It seems like the assumption is always that we got better and “got on with our lives”. That exact phrase was actually used by the first consultant I was referred to, when only ill for 6 months or so.

 

[chrisb]

It will be recalled that that was the advice Wessely et al proposed in the 1989 paper

One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face. This is most likely to be achieved if the doctor is perceived as open-minded and enquiring. It is necessary to share with the patient the uncertainty surrounding the topic, to admit that there are many conditions for which medicine does not possess all the answers, and to help the patient accept that there will never be an 'ultimate opinion' or 'final specialist'
The patient should be told that there is no life threatening illness left, although the doctor must be aware of the potential risks of depression, and that it is now time to 'pick up the pieces'.
https://bjgp.org/content/bjgp/39/318/26.full.pdf

 

[Dolphin]

 

[rvallee]

We do not know what happened to people with SARS and the long-term damage from it along with getting ME/CFS. The infections were in Asia and once SARS disappeared research funding dried up. So in the West we just don’t really know what happened. So this could’ve happened already with SARS which is 80% identical to COVID.

Well there was a cohort in Toronto and a researcher was very interested in studying them but medicine got bored and now we missed out on useful information because you can't get funding researching something that bores medical authorities. Very smart system.

Although it sure would have been nice if the larger cohorts in Asia got the attention. Would have basically added up to the same. But the flaw of this-is-boring-so-we-don't-care is universal and that's really an even bigger problem.

 

[rvallee]

Long Haulers: The Casualties of COVID-19

https://www.emsworld.com/article/1224834/long-haulers-casualties-covid-19


Worth reading this in full. Sea change is coming.

Chronic fatigue. Exertional dyspnea. Myocarditis. Hypercoagulopathy. Brain fog. Muscle aches. Paresthesia. Altered sleep patterns. Psychiatric disorders. Lung scarring. Gastrointestinal issues. COVID toes. Hair loss. These are but a handful of debilitating conditions recovering SARS-CoV-2 patients are battling. For the large part of the COVID-19 pandemic, the medical community has been scrambling to just keep sick people alive. Now, it’s trying to help those survivors live with disabilities secondary to viral infection.

The most common enduring symptom found in this population is debilitating fatigue. Even conditioned athletes accustomed to running 10ks pre-infection can hardly make it to their kitchen without feeling completely drained of energy. A number of studies indicate that anywhere between 78% to 87% of survivors continue to experience a range of symptoms for weeks post-recovery.1 Normal life as they knew it has ceased to exist.

“There's been a slow gathering of casualties from this virus who should not be casualties,” says Ken Scheppke, MD, state EMS medical director for Florida and chief medical officer for Palm Beach County Fire Rescue. Scheppke conducts literature research and provides updates on the latest scientific developments on COVID-19 to EMS agencies and the Florida Department of Health. Scheppke saw patients as early as March who were taking weeks to recover, which turned into months, prompting him to dive into the literature and research potential causes of these lingering symptoms. He discovered that many of the patients were moving towards meeting the criteria of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a lingering condition known to be associated with viral infections, but never in the numbers of patients we are beginning to see with this pandemic.

Scheppke says ME/CFS has been a side effect of a number of viruses, including SARS-CoV-1, Epstein-Barr virus and Ross River fever. However, because the percentage of those who experience ME/CFS is relatively low, mainstream medicine hasn’t focused enough energy researching the condition. But now, it’s impossible to ignore.

“Now is the time for medicine to turn its collective eye towards this post-viral syndrome and figure out what’s going on so we can help these poor people suffering with this illness,” says Scheppke, adding that while it’s important to inform the public of the risk of death from COVID-19, we must also warn them that other risks exist, especially for young, healthy people who may think they’re less vulnerable than older adults or those with comorbidities.

Some people with ME/CFS have muscle aches, and acupuncture has shown to reduce pain. But overall, there’s simply not enough research available on this condition, says Scheppke. “If there is a silver lining in this bad news, my suspicion is that medicine is going to put a spotlight on this particular disease in the future because so many people are experiencing this post-viral syndrome. We're going to have to address this,” he says, which he anticipates will also help others who have been dealing with the syndrome from other viruses. “Hopefully we'll have better news for these folks down the road.”

I will personally add, again, that medicine could save a lot of suffering, a lot of wasted attempts, a lot of time, months in fact, by simply listening to the people who have actual knowledge and experience, most of which will either be patients or work closely with.

Please listen and, especially, work with the patients. All the mistakes have been committed already, we can steer you clear of them. Instead right now we are seeing all those mistakes being committed in bulk. That's a complete waste, that ground has already been covered and there are experts who can actually lead this, people who actually know where to go next.

 

[rvallee]

Speaking of committing all the mistakes in bulk:

New Recovery Programs Target COVID Long-Haulers

https://www.medpagetoday.com/infectiousdisease/covid19/88546

Patients whose chief complaint is neurologic, whether it's cognitive impairment, fatigue, or neuropathy, "need rehabilitation and recovery as well," Fine said. "They may not require a formal cardiac or pulmonary rehab, but they still need to work on focus, attention, and reconditioning."

Behavioral health is an important component of the recovery programs as well, leaders said.

"The physical symptoms are important but we have to take a look at the mental toll COVID takes on these patients," Chen told MedPage Today. "There's an increased incidence of depression among these patients, so our psychiatric and behavioral health services are important for them."

When there are wildfires raging around, being concerned about the lingering smell of smoke is a serious waste of time. Focus on upstream, not downstream. Why is medicine so damn obsessed with everything downstream?

Here it's clear that this program is anchored on the respiratory stuff and lumps the PVFS as part of it. It's extremely important for the post-viral symptoms to be recognized for what they are, too many efforts are being wasted with standard pneumonia recovery, which is an important subset here but not the whole.

 

[Snowdrop]

That's not quite fair about there being no research into SARS.
Here's an example:

https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37

 

[rvallee]

That's not quite fair about there being no research into SARS.
Here's an example:

https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37

Yes, pretty sure it's Moldofsky. He wanted to do long-term follow-up and could not get funding so that's all he could publish. Should have been 10-100x that and many other teams. Experts knew more epidemics, even pandemics, were guaranteed to happen. I think overall only 4-5 papers were published, one framed entirely on mental health. This is dereliction of duty, plain and simple.

Meanwhile there's always money in the banana stand for yet another CBT for CFS study and derivatives of that bland formula.

 

[Snowdrop]

Yes, pretty sure it's Moldofsky. He wanted to do long-term follow-up and could not get funding so that's all he could publish. Should have been 10-100x that and many other teams. Experts knew more epidemics, even pandemics, were guaranteed to happen. I think overall only 4-5 papers were published, one framed entirely on mental health. This is dereliction of duty, plain and simple.

Meanwhile there's always money in the banana stand for yet another CBT for CFS study and derivatives of that bland formula.

Yes, those in Canadian Health research who green light funding failed many times over. The linked research is Moldofsky. I don't know if he's busy studying covid but I hope so and that the people who hand out the cash are starting to realise spending money on this actually matters for keeping Canadians healthy.

 

[leokitten]

That's not quite fair about there being no research into SARS.
Here's an example:

https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37

Many of us have read this paper and it’s been posted before... but 1 single paper researching what happens to people long term after a serious pandemic? It’s appalling. I don’t know think anymore exists, at least on Pubmed I couldn’t find any. Even the lead or corresponding author on that paper said so and that funding dried up, no one was interested.

A single paper is nothing in life sciences.

EDIT: what I meant by not knowing about what happened to those with SARS was in response to Tuller posts. From the one SARS paper yes we do have evidence that many did get ME/CFS, but what we don’t know much about is did any heart, lung, or vascular long-term damage occur and was this self-limiting and somewhat independent of ME/CFS initiation and persistence.

 

[Kalliope]

 

[Mij]

The recovery pathway of SARS survivors mirrors that of ARDS patients.

There has been interest in the long term outcome of patients who have survived acute respiratory distress syndrome (ARDS), as evidenced by seven studies published since 2000 on patient outcome following an episode of ARDS.

https://www.mayoclinic.org/diseases-conditions/ards/symptoms-causes/syc-20355576

I don't see this as having any similarities to ME.

 

[Mij]

The study's most striking finding was that although pulmonary function was "near-normal to normal" at five years and patients didn't show "demonstrable weakness on examination," all participants reported that they felt weaker and less able to engage in vigorous exercise. Patients also reported new and continued impairments across a spectrum of physical and neuropsychological disorders, which in turn resulted in social isolation and sexual dysfunction.

https://journals.lww.com/ajnonline/...g_Term_Effects_of_ARDS_After_ICU_Stay.11.aspx