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

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.

 

Thank you!

 

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.

 

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.

 

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

 

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

 

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.

 

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

 

https://twitter.com/user/status/1304781248263598086

 

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.

 

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.

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.

 

Speaking of committing all the mistakes in bulk:

New Recovery Programs Target COVID Long-Haulers

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

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.

 

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.

 

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.

 

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.

 

https://twitter.com/user/status/1304787955421241345

 

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.

 

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