Trying to understand chronic fatigue syndrome


#1

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#2

Some of the symptoms -- "...My legs seemed to have been amputated and replaced with tubes of liquid concrete, and just shifting them on the table made me grunt like an Olympic weightlifter. Not only that, my very bones hurt. Most disturbingly, my brain felt like a swollen mass..." -- sound a lot like hypothyroidism.


#3

Thank you for posting this.

My experience of being treated for CFS in the UK was not good. I could go way off topic ranting about it, but a few years ago my treatment consisted of six sessions of Cognitive Behavioural Therapy and a lot of victim blaming when it didn't work.


#4

leaky guts y'all


#5

I've often thought to myself that if people were being experimented on (medically) you'd see a lot of the kind of official behavior mentioned in this article. I'm so glad such things are unthinkable in this modern age!


#6

All the data I have seen so far points toward psychosomatic. Therapy targeted to depression/ anxiety is pretty much all that has helped. The problem with the "everyone thinks one thing but only I know what's really true" story is that sometimes everybody really is right.


#7

Until they ruled out "immune system run amok" which seems plausible, I wouldn't conclude anything.


#8

For some people (About 50%, from memory). Others show little to no change, and the rest get significantly worse.

Thankfully I am in the middle group, not the last. The only thing that has helped me is pacing, and slowly increasing how much I try to do. It has been 10 years and I still couldn't keep a part time job, but at least I am not stuck in bed sleeping for 18 hours a day.


#9

I would like to take this opportunity to point out that Hashimoto's Thyroiditis (the first discovered autoimmune disease) is wildly underdiagnosed.


#10

It is saddening to hear about such experiences. I wonder what did work best for you so far.

// Edit: just saw your second post... //

Have you tried mindfulness based approaches? They may help to reduce overall strain on the nervous system and to use available resources more efficiently. Besides, they have proven to be beneficial for the immune system.


#11

How frequently does evidence point primarily back at the victims wrongheadedness, in your experience?


#12

CFS is hell, I know a former mountain/backcountry rescue, firefighter structural and wildland, paramedic, SWAT medic, parachutist, diver, officer, pilot, instructor for most of the above, and general all around action man with all of the accessories included who lived on a life of athletic adrenaline, he even did heli-attack firefighting for the forest service when in college, one step below smokejumper.
Then one day his liver swelled up and he bloated up, now every time he overexerts himself or gets chilled it can be weeks down in bed.
He can still do a century on bicycle in the mountains when he is well and still flies but the professional rescue life is now gone, he survives doing analog hardware analysis for RF caused malfunction and draws a disability. Fortunately he had a second passport was able to move to a country which had socialized health so he doesn't have to give up having a home and family to stay alive.


#13

So what is this "data" you have seen, other than what's in that article which doesn't at all seem to point that way?

To explain the original ME/CFS symptom cluster as depression pretty much requires postulating a new type of depression, which appears literally overnight without warning, manifests primarily as physical debilitation, causes clinical symptoms such as elevated white blood cell count, and appears in clusters characteristic of infectious diseases. That isn't what the DSM-IV or V define as characteristic symptoms of depression or anxiety disorders.

Now, if you're talking about the expanded and extremely vague definition of CFS which could cover virtually anything - well, that's the point of that article, isn't it? You did read the linked article, right?


#14

I've had Hashimoto's for some years now, and while I had some general symptoms of tiredness/exhaustion, along with depression, until it was diagnosed and I started on thyroid hormones, it was nothing like the ME/CFS which my ex-wife contracted living in Tonga in the early '80s.

It's the difference between feeling listless and "low" and not having much energy to do anything, in the case of hypothyroidism, versus being almost unable to stand up from a chair, in the case of CFS. Being wiped out for days by trying to do just a little exercise, as described in that article, is really characteristic.

My theory, since everybody seems to have one [cough], is that ME is an unrecognized emergent viral disease.

My ex-wife unquestionably caught it in Tonga, where she was doing field research in anthropology, and Tongans immediately recognized that cluster of symptoms as the disease "fakamahaki", if I remember the name right. (They attributed it to hostile ghosts, and believed it was usually contracted by going too near a graveyard at night - but the point is they recognized that same group of symptoms as constituting a specific disease.) The earliest recognized outbreaks of ME, and the early descriptions of it in Western medicine were in New Zealand, which has a large population of Polynesian expatriates, particularly Tongan and Cook Islanders; some of the early US outbreaks were in Southern California, which also has a large number of Polynesian expatriate communities.

If ME/CFS is caused by a virus or other infectious agent with a very long latency period, which some people's immune systems (perhaps most people's) are able to fight off successfully, that would explain an awful lot about it.


#15

Here is a link to a list of more than 500 peer-reviewed papers showing physiological medical abnormalities in the disease that has called "Chronic Fatigue Syndrome." I encourage those who are skeptical about the disease to take a look at it and see if you change your mind.

http://www.paradigmchange.me/cfs-info/cfs-and-medical-abnormaliti.pdf


#16

Can that list be reduced to specific physiological medical abnormalities, all of which have been found at least in three independent, unrelated studies? If not, it only consolidates the critic's belief: at this point in time, it looks like a decade of intensive research did not lead to conclusive evidence.

Certain forms of mental therapy which help patients with known psychological conditions as well as cancer patients may help CFS sufferers live with their symptoms, maybe even alleviate a hypothetical physiological cause. How is that a bad thing? Until there is a physical cause found, and a physical therapy developed, it is the only thing that helps.

To entirely dismiss mental help does disservice to CFS sufferers and may cause the CFS lobby to be perceived as sectarian.


#17

It's pretty simple: smoke chronic, feel fatigued

Thanks, I'll be here all week.


#18

Well, yes Semmelweiß was wrong and maternal deaths had nothing to do with hand hygiene. TB can be greatly cured in Sanatoriums in beautiful places without antibiotics. Cancer is never caused by infectious agents.

Sorry, what else was everybody in the medical establishment wrong about in recent history?

If you even remotely look at the history of medicine you will discover that the vast majority of time everyone was wrong. Why should this be different now?

Good medicine is administered by the open minded. And "the everyone really is right" kind of medicine needs to be consigned to the dustbin. The faster the better.


#19

In that document tachycardia and a smaller left ventricle are mentioned in more than three studies, although I haven't checked to see if they are unrelated studies.

Mental health therapy has a bad reputation because organisations like the NHS have pushed CBT and graded exercise as cures, then blame the 50% of patients who do not recover for not trying hard enough. This, along with getting abuse from people who also are negative about mental illness and don't differentiate between the two, has led sufferers to have concerns when therapy is brought up.

I have looked at mindfulness approaches since you mentioned them, whilst I am not convinced that they will have much direct effect on my CFS, they might help with other problems I have.


#20

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