Article in Vice: The Medical System Should Have Been Prepared for Long COVID

https://www.vice.com/en/article/qjp...repared-for-long-haul-covid-patients-symptoms

 

This is just brilliant.

The rest of the article is very good too. It goes to the heart of the problem of what went wrong with ME/CFS and so many other illnesses: MUS and the associated belief system.

 

I have a pretty good idea of the suggestion I'd be making by way of reply.....

 

Procrastination in action. Could they have prepared better for post-viral problems, or for a global pandemic in general? Of course, but budgets are quarterly or annual, and the tens of trillions of dollars extra for being unprepared won't show up on their budget sheets. Prepare for lots of responsibility denial.

 

And people with ME are in a good position to understand why it is not ready.

Good to see this article take aim at the foolish idea of diagnosing generalised anxiety that nebulous free range illness that is the panacea of the incompetent.

It's one thing for incompetent fools to run loose diagnosing science fiction it's entirely something else that medical systems, research funders and so-called science journals aid and abet this nonsense. We are seeing the results and they are horrific. And they were utterly predictable.

Non of the fairy-tale of BPS is done in isolation. Let loose on the world it has brought nothing but horrible suffering the cost of which will be so much greater than if those with power had dealt effectively with this fad.

BPS cultists cry foul and claim they are bullied. I suggest that what they are feeling is humiliation and that claims of bullying help push that aside and deflect those unpleasant feelings (I believe they have a treatment for this).

This is where greed (political aspect) and arrogance (eminence aspect) has brought us.

 

I'm wondering if using S4ME twitter account in places like this, thanking AL for a generally good article might help S4ME be more visible as he gets a lot of responses from PwME?

 

what parts? I haven't read it carefully yet.

 

I didn't understand it this way. I understood it to mean the prevalence of consults in which a clear cause for symptoms could not be determined. Which sounds about right, as the only way symptoms are acknowledged to be "real" is made through tests and it often takes many attempts to do the right test, leading to many consults in which symptoms are unexplained as a routine part of the job. Many common symptoms that aren't disabling fall in the category, people just deal with them as best they can.

Just as true with electronics or any other skilled profession. The difference is that you can't just throw away and replace your body, which is the normal way of dealing with problems whose caused cannot be explained, and that's not even accounting for how different it is to troubleshoot a machine, being able to take it apart and tests individual components, vs a human body.

I'd even suggest those numbers are higher. Truth is for the most part "real" symptoms are determined mostly by an arbitrary process, most of them are unexplained, even when they are acknowledged as real. At best medicine will acknowledge a symptom is associated with a disease. Doesn't mean it's explained, it often explicitly isn't.

Of course the problem is BPS zealots abusing this obvious ambiguity to mean psychogenic symptoms, but that's a different problem having to do with failure of execution and the lack of significant oversight or quality assurance, largely having to do with the main stakeholders in medicine, the patients, having no say in any part of the process.

 

I am not that impressed. The chief weakness I see is that if any doctor who is broadly happy to go with 'heartsink patient's MUS will see the article as ill-informed journalism and not testing their beliefs in any way. To be honest it is pretty ill-informed. The authority comes from 'One of the world’s foremost experts on the problems with MUS' despite the fact that I doubt a single person other than her would regard this is an appropriate description.

And what has MUS got to do with being unprepared for LongCovid anyway? Not much.
I can see the majority of readers as finishing the article thinking - 'OK, seems LongCovid is all in the mind too then- sort of Yuppie flu, right?'.
Rather than fluttering about like a butterfly with O'Leary and Brea why not get properly informed.

 

Hm...
To edit a bit:

“There is such a thing as biological disease and it is different from mental illness.”
It’s just bullshit, using pseudo-philosophy ...”

 

In my opinion, a lot. ME/CFS and other illnesses would have been researched more without the MUS belief system (which explicitly says that no disease is present). Even if no progress had been made in understanding the biology well enough to do anything, the risk of long covid would have been taken seriously and countries would have reacted with more urgency.

 

I don't follow that. We were unprepared for a pandemic. If people in charge aren't bothered about people dying horribly gasping for breath then they are unlikely to be too bothered about longer term illness.

But I think my main point was that the lesson comes from ME specifically, not from the more recent vague story about MUS. After all LongCovid isn't MUS- it is by definition due to Covid. My impressions that mixing all these politically charged issues in this rather random way is most likely to leave readers confused, ending up thinking 'oh yeah sort of like yuppie flu then'.

 

Some were just uncaring but most were probably trying to balance the economic harm of lockdowns versus the risk of the illness and their calculations didn't consider the possibility of postinfectious syndromes in the younger population. In the first months, the narrative was that of an illness dangerous only to older people, with the rest hardly at risk. It was a disastrous miscalculation.

According to the MUS philosophy, ME/CFS is not a real disease but is caused by psychological factors like personality or stress, with the role of the infection downplayed.

 

Exactly. Of course every detail of the causation of each problem may never be known but the vast majority of cases have a recognisable explanation. Pregnancy is due to babies and cystitis is due to. bacteria. In my rheumatology clinic unexplained problems were tiny proportion.

These figures are complete misrepresentations based on counting symptoms that are not explained. These are always present. If someone has a worn hip joint there will always be one slightly unusual feature like clicking. The person with cystitis may also have a headache - but so what.

 

https://twitter.com/user/status/1372592086743154690

https://twitter.com/user/status/1372938795146997768

 

A nice response @Robert 1973.