Anaesthesia in Patients Suffering from Postviral Syndromes, 2025, Weber

Yann04

Yann04

Senior Member (Voting Rights)
Abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystemic disease, with post-exertional malaise as the primary symptom and can be accompanied by concomitant diseases, such as mast cell activation syndrome (MCAS) and postural tachycardia syndrome (POTS). The activities of daily life are seriously impaired. If anaesthesia is necessary, adequate anaesthetic management and the avoidance of potentially harmful drugs must be ensured.

LINK (Article in German)
 
An example of real harm and a potentially fatal situation caused by ignorance and gaslighting.
Edit: by harm I mean her not seeking care sooner and being misdiagnosed with depression.

Ms. R, 31 years old, developed ME/CFS after a moderate bout of COVID-19 in 2023. The symptoms of COVID-19 never disappeared; on the contrary, they worsened day by day. The primary symptom was post-exertional malaise with pronounced exercise intolerance and chronic whole-body pain with fibromyalgia-like characteristics. Later, severe postural tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) developed.

Guideline-compliant diagnostics and treatment could not be initiated until the end of 2024, as the patient had been labeled as depressed by her primary care physician. She was supposed to undergo rehabilitation and exercise. However, activating therapies are contraindicated in ME/CFS. All of this led to a severe crash, which left Ms. R more or less bedridden.

(…)

At the beginning of February 2025, she suddenly experienced another bout of fever and abdominal pain. Was it an infection? Another crash? Or something else? The patient was afraid to go to her family doctor. Too much had gone wrong in the past. Therefore, she waited, which could have been fatal, as she developed acute appendicitis.

Ms. R was admitted to the hospital. The diagnosis was made quickly, but no one had ever heard of ME/CFS. As of this writing, she is still recovering from the anesthesia. She can no longer speak. It's too exhausting. After reviewing the anesthesia protocol, one thing became clear: basic principles of anesthesia management were not adequately followed. The anesthesiologist is probably not to blame, as there is hardly any literature on the subject.
 
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Utsikt said:
An example of real harm and a potentially fatal situation caused by ignorance and gaslighting:

Ms. R, 31 years old, developed ME/CFS after a moderate bout of COVID-19 in 2023. The symptoms of COVID-19 never disappeared; on the contrary, they worsened day by day. The primary symptom was post-exertional malaise with pronounced exercise intolerance and chronic whole-body pain with fibromyalgia-like characteristics. Later, severe postural tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) developed.

Guideline-compliant diagnostics and treatment could not be initiated until the end of 2024, as the patient had been labeled as depressed by her primary care physician. She was supposed to undergo rehabilitation and exercise. However, activating therapies are contraindicated in ME/CFS. All of this led to a severe crash, which left Ms. R more or less bedridden.

(…)

At the beginning of February 2025, she suddenly experienced another bout of fever and abdominal pain. Was it an infection? Another crash? Or something else? The patient was afraid to go to her family doctor. Too much had gone wrong in the past. Therefore, she waited, which could have been fatal, as she developed acute appendicitis.

Ms. R was admitted to the hospital. The diagnosis was made quickly, but no one had ever heard of ME/CFS. As of this writing, she is still recovering from the anesthesia. She can no longer speak. It's too exhausting. After reviewing the anesthesia protocol, one thing became clear: basic principles of anesthesia management were not adequately followed. The anesthesiologist is probably not to blame, as there is hardly any literature on the subject.
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These stories are hard to read. Because as someone with severe ME, you know this is the rule, not the exception. How many thousands, tens of thousands?, hundreds of thousands?, of cases like this happen, for just one to be written down in the academic literature, and be dismissed as a n=1 experience when brought up by others.
 
Utsikt said:
After reviewing the anesthesia protocol, one thing became clear: basic principles of anesthesia management were not adequately followed. The anesthesiologist is probably not to blame, as there is hardly any literature on the subject.
Click to expand...

I wonder what that is supposed to mean, though. We don't have any information about special procedures for ME/CFS so if the anaesthetic was poor that has nothing much to do with ME/CFS.
 
I don't know anything about anaesthesia. Is Nitrous Oxide still used as one of the gases? If it is then this might be relevant :

https://www.b12-vitamin.com/anesthesia/

Nitrous Oxide-Induced Vitamin B12 Deficiency Resulting in Myelopathy

https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/

Another issue is that diagnosing Pernicious Anaemia is very difficult and can still be missed with modern testing.

And a personal anecdote... I've had quite a lot of operations throughout my life, several minor, and a couple major. I have never been told I'm low in iron or ferritin before surgery, but have often discovered that my iron and ferritin levels have dropped quite dramatically after surgery and I've become anaemic afterwards. I've never been told that my surgeries involved lots of bleeding. I often wonder how many people have similar problems but simply haven't discovered them.

Edit : Typo
 
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Jonathan Edwards said:
I wonder what that is supposed to mean, though. We don't have any information about special procedures for ME/CFS so if the anaesthetic was poor that has nothing much to do with ME/CFS.
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The author says there are no specific recommendations for ME/CFS in the very next paragraph, so I'm not sure why you feel the need to "correct" them:
Weber said:
After reviewing the anesthesia protocol, one thing became clear: basic principles of anesthesia management were not adequately followed. The anesthesiologist is probably not to blame, as there is hardly any literature on the subject.

A search of the current literature on PubMed reveals few specific recommendations regarding the administration of anesthesia in ME/CFS. Further studies are called for, but these are currently lacking.
Click to expand...
He does not specify exactly how basic principles weren't accurately followed, but he does state they weren't, and that is not for nothing. I'm not familiar with the details of Austrian pre-op screening, but I would not be surprised if it has to do with not being careful enough and stepping over things that are usually taken into account when deciding the anesthesia specifics, because of unfamiliarity with/underestimating of ME/CFS.
He's being nice about it, because there is scarce literature, but I would not be surprised if they just put Mrs. R. on their operating table like they would a healthy person, without any of the consideration that they would e.g. give a person with MS, or for the potential effect histamine-releasing medication or blood pressure fluctuations would have on her body and overall health post-op.

This is not about knowing precisely what ME/CFS is, but about taking good precautions when anesthesising someone so as not to exacerbate their existing health condition.

As someone with disabling ME/CFS-adjacent illness with dysautonomia and histamine/mast cell issues who will have to be operated in the future weeks (and who has been feeling uneasy about precisely this shit), I greatly appreciate the discussion of this topic and this initiative of making it something for anesthesiologists to consider and think further on.
 
Arvo said:
This is not about knowing precisely what ME/CFS is, but about taking good precautions when anesthesising someone so as not to exacerbate their existing health condition.
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I take your point but I still think that since we know nothing solid about haemodynamic abnormalities in ME/CFS the argument seems a red herring. Anaesthetists should be careful of everyone. We do not have any reason to think mast cells behave abnormally in ME/CFS.
 
Jonathan Edwards said:
I take your point but I still think that since we know nothing solid about haemodynamic abnormalities in ME/CFS the argument seems a red herring. Anaesthetists should be careful of everyone. We do not have any reason to think mast cells behave abnormally in ME/CFS.
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To me it would be more about being more considerate of the cost/benefit ratio of anesthesia and surgery, w.r.t. PEM.

Taking into account OI and stuff, ie. not operating with patient sitting up.

And generally being aware that people with disabling chronic illness will be more likely to have tried a lot of different pain/sleep drugs, and will likely have a higher tolerance than expected.
I think generally when pwME have surgeries they are treated like a healthy, or a depressed person. There’s little consideration that are health is very fragile.
 
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