Harvard Medical School article: Chronic fatigue syndrome: Gradually figuring out what’s wrong. Komaroff. 2019

[John Mac]

An article in Harvard Health Publishing by Anthony Komaroff giving an overview on ME/CFS

https://www.health.harvard.edu/blog...dually-figuring-out-whats-wrong-2019111418224

 

[Forbin]

This is a great article to have available on-line, particularly because of the association with the Harvard Medical School.

It may not be news to the many of us who have been affected by ME/CFS for years and decades, but I'm sure it would have been incredibly helpful to have had something like this to show to bewildered friends, family and doctors when we first became ill. I hope it helps those who, unfortunately, are still being being struck down with ME/CFS today.

 

[Snow Leopard]

I have mixed feelings. The article itself is quite concise, has a few details and some positivity that doesn't come off as cheesy. I like the final comment:

Instead of doctors saying, “The tests came back normal, there is nothing wrong,” they will say, “Tests showed us what was wrong, and we have treatments to fix it.”

And doctors will recognize the wisdom of the wise advice we all learned in medical school: “Listen to your patient. The patient is telling you the diagnosis.”

The problem (apart from not mentioning my favourite exercise physiology findings) is the fact that there really have been very few original insights and still a lack of research capacity going forward. The amount of articles seems to go up by 1000 (we're now over 9000!) everytime someone quotes a similar figure. But 9000 is a drop in the bucket, given most of them are low-budget studies studying the same old things and getting the same old null or non-specific results) (oh and the old '$17 to $24 billion annually' is way out of date, given inflation)

 

[Hoopoe]

Activation of “hunkering-down” systems. Animals, including humans, have systems to protect them during times of major threats. For example, worms and bears that are faced with a shortage of food “hunker down”: they activate systems that focus the energy they are able to make on the processes necessary to stay alive. Nonessential, energy-requiring activities are minimized. Humans who are seriously injured or sick also activate various hunkering-down systems. Some evidence suggests that in ME/CFS the hunkering-down systems may have been turned on, and remain inappropriately stuck. Research teams are trying to figure out how to turn off the hunkering-down systems.

Which systems does he refer to here? Is this a reference to Naviaux' findings and ideas?

 

[rvallee]

Which systems does he refer to here? Is this a reference to Naviaux' findings and ideas?

Seems to refer to the general malaise, brain fog, weakness and aches that accompany the flu and is caused by the body's response, not the pathogen. It doesn't seem to be a well-defined concept. Sometimes called the sickness response but I'm not sure why he chose that hunker down label.

It would definitely help to clarify that concept. It's something everyone is familiar with and would go a long towards explaining what ME feels like, because malaise doesn't really cut it that much better than fatigue does. No one who's been sick with the flu for a week will say they were "fatigued" or "malaised" for a week. Everyone will say they were sick. That's the only word that fits, but we're somehow not allowed to use it.

I guess it's just not considered that important since it's believed to only exist as a temporary thing, that when it becomes chronic, like with us, it's something else and some people have taken to call it fatigue for arbitrary reasons, mostly having to do with being necessary for their alternative explanation.

Medicine would enormously benefit from a "back to basics" approach to basic vocabulary. Too much slang with too many meanings has creeped in and the meaning of some words has been stripped of all meaning. That so many words have multiple meanings is embarrassingly bad for a field of science.

 

[Mithriel]

Activation of “hunkering-down” systems. Animals, including humans, have systems to protect them during times of major threats. For example, worms and bears that are faced with a shortage of food “hunker down”: they activate systems that focus the energy they are able to make on the processes necessary to stay alive. Nonessential, energy-requiring activities are minimized. Humans who are seriously injured or sick also activate various hunkering-down systems. Some evidence suggests that in ME/CFS the hunkering-down systems may have been turned on, and remain inappropriately stuck. Research teams are trying to figure out how to turn off the hunkering-down systems.

I suspect that we are in a basic survival mode most of the time because our bodies do not have enough ATP because of the broken aerobic respiration system. The Workwell studies show that we rely on anaerobic respiration for our basic needs like using a credit card for everyday food.

We do not have an inappropriately stuck system we have a system that is doing its job properly by helping us survive with very broken bodies.

 

[Dolphin]

The problem (apart from not mentioning my favourite exercise physiology findings) is the fact that there really have been very few original insights and still a lack of research capacity going forward. The amount of articles seems to go up by 1000 (we're now over 9000!) everytime someone quotes a similar figure. But 9000 is a drop in the bucket, given most of them are low-budget studies studying the same old things and getting the same old null or non-specific results) (oh and the old '$17 to $24 billion annually' is way out of date, given inflation)

Also there haven’t been 9000 studies finding abnormalities: these sorts of figures tend to refer to the number of PubMed search results which cover all sorts of publications. Not sure how many studies there have been finding abnormalities, maybe 1000-1500?

 

[Wilhelmina Jenkins]

Also there hasn’t been 9000 studies finding abnormalities: these sorts of figures tend to refer to the number of PubMed search results which cover all sorts of publications. Not sure how many studies there have been finding abnormalities, maybe 1000-1500?

I would be surprised if Dr. Komaroff were not right about the number. He has been tracking these publications since the early ’90s at the latest and the number has gone up slowly. His own paper in the ‘90s was a game changer; he was the first to show brain scans that distinguished our brains from depression and other conditions.

This is a complete aside, but when that paper came out, a good friend was at an appointment with one of our “experts” who held up the paper and said, “This paper says that your brain is deteriorating and will stop functioning.” My friend went home, took out a hunting knife, and contemplated suicide. I happened to call and literally screamed “That’s not what it says! Read it”

My friend stuck around until he died many years later of a heart attack. (The same “expert” advised him not to stop smoking.) I haven’t forgiven the “expert” yet.

 

[Dolphin]

I would be surprised if Dr. Komaroff were not right about the number. He has been tracking these publications since the early ’90s at the latest and the number has gone up slowly. His own paper in the ‘90s was a game changer; he was the first to show brain scans that distinguished our brains from depression and other conditions.

https://www.ncbi.nlm.nih.gov/pubmed/?term="Chronic+fatigue+syndrome"

Items: 1 to 20 of 6756

This sample shows an example of how most papers are not individual biological studies with their own results:

Items: 1 to 20 of 6756
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Implementing guided ICBT for chronic pain and fatigue: A qualitative evaluation among therapists and managers.

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I think I recall him using the 4000+ number when they were 4000+ "chronic fatigue syndrome" entries in PubMed.

 

[ME/CFS Skeptic]

I would be surprised if Dr. Komaroff were not right about the number

I think Dolphin is right. Pubmed gives hits if keywords are used in abstract information. If you used all synonyms of ME/CFS you probably get a figure of around 6000 to 9000 hits. Not all scienitific papers ard indexed on Pubmed but most of them are.

Many of those hits will have little to do with ME/CFS, they just mention it somewhere. And of those about ME/CFS only a minority will report on biomedical abnormalities (there are letters, editorials, treatment trials systematic reviews, all the questionnaire studies etc.). So it doesn't seem likely that there are 9000 studies showing biological abnormalities in ME/CFS. What he probably means is there have been a lot of papers on ME/CFS (around 9000) and many of these have reported biological abnormalities or something like that.

 

[Wilhelmina Jenkins]

Possible. Someone should ask.