“Walking for five minutes feels like running a marathon.”
February 15, 2016 3:05 AM   Subscribe

That’s how Sarah Norfolk describes Chronic Fatigue Syndrome. Seventeen other sufferers also offer their impressions of this debilitating condition.

CFS researchers have been at odds with each other and with the patients they seek to serve. There is some hope that maybe everyone can work together and start making progress in understanding and fighting back against the condition.

For those of you playing at home, here’s a CFS checklist.
posted by bryon (15 comments total) 14 users marked this as a favorite
 
I'm really glad this is finally getting the attention that it deserves.
posted by AlexiaSky at 3:59 AM on February 15, 2016 [2 favorites]


I don't have CFS/SEID, but got interested in it after a rheumatologist tried to fob me off with that diagnosis. (Long story short, if you get a CFS diagnosis you don't believe, or for that matter any unhelpful diagnosis involving fatigue, it may be well-worth your while to find a good sleep doctor.) But I read a lot about it while I was trying to figure out if that diagnosis could apply.

From the second link: One of the few treatments to appear effective in clinical trials is rejected by many patients. Because it focuses on exercise and cognitive therapy, they say it presumes a psychological origin for their illness, which they consider as harmful as it is insulting.

While this is more or less true, it's also misleading, because the situation is a lot more complicated than that, and there are additional reasons for patients and advocates to reject the graded exercise + CBT approach.

One of the biggest issues in CFS/SEID research is identifying the right patients. There are a lot of things that look like CFS/SEID but may not be the primary disorder. Researchers who are using older criteria may be finding treatments that work for the subset of people in their study group who don't actually have the right disorder.

The most effective approach to CFS/SEID right now -- arguably the only effective approach for a lot of patients -- is for the patient to keep within their energy envelope -- that is, restrict their activities to the level of energy their body can supply. There's evidence that exercise, including graded exercise treatments which frequently ask patients to push past their energy envelope, can actively harm patients with active CFS/SEID and actually make the disease worse. This is primary reason people with CFS/SEID consider the graded exercise approach actively harmful. (Not sure why that isn't made clear in the article, but wanted to point it out.)

For anyone who's curious enough to do further reading, Hillary Johnson's Osler's Web is an excellent overview of the early CFS outbreaks, including outbreaks well before Incline Village, and the politics behind research of the disease. It's a fascinating (if horrifying) book.

The blog Occupy CFS is excellent for up-to-date information about research, funding, and potential treatments. It's written by Jennie Spotila, who has CFS and is quoted in the second link in the OP.
posted by pie ninja at 5:27 AM on February 15, 2016 [16 favorites]


A classic way of sharing what CFS feels like is the Spoon Theory. It's sheer genius. I've shared it with friends, family, doctors. 'Spoons' are a simple, relatable and flat-out brilliant framing device for managing the symptoms and expectations of an invisible disability among people who want to help, but can't see it and have to take your word for it.
posted by tabubilgirl at 5:48 AM on February 15, 2016 [4 favorites]


It's an interesting case. It's far more prevalent in women than in men, but you wonder how much of that is diagnostic bias. Back during the turn of the last century, when it was neurasthenia, far more men then women were diagnosed. It's like the return of the invalid women, under a different hat.
posted by leotrotsky at 6:30 AM on February 15, 2016 [1 favorite]


There are some pretty good diagnostic tests these days. Can't speak to all diagnoses, and yes, there is some damn lazy womenz-centric hand-waving going on and some pretty sordid history of mis-diagnosis and lack of interest, but the POTS-related CFS's can be pretty conclusively called - tilt tests and responses to POTS specific drugs and all.
Certain doctors ACCEPTING conclusive diagnosis is another issue, because, as I've mentioned previously on the blue, the symptoms are so frustrating and walking through jello and thinking through fog everyday can make you pretty miserable on the bad days (although minor victories like Doing The Laundry! and Walking to the Corner Store! can lift you to heights that have you fist pumping the sky and dancing), and sadness is, to the wrong practitioner, clinical rather than contextual depression, and we know what happens to perception of verifiable physical symptoms when they start thinking THAT. Yes, the cross-something-or-others with gender expectations is a whole extra kettle of fish, but there's a fair bit of current thinking that indicates the prevalence of women is physiological rather than societal expectation.
Sorry, no cites. It's a rotten day today, and I'm using up my spoons being sick of being told to SMILE because shuffling and not holding up my head makes other people uncomfortable.
So - sorry if this comes across as combative, leotrotsky - that's not the intent. I'm just torn between chewing rugs because i got no spoons today and being happy that The Mighty put up that article.
Solidarity in sleep and fluffy eiderdowns, y'all. Let's go back to bed. We'll get up again on Wednesday.
posted by tabubilgirl at 7:00 AM on February 15, 2016 [5 favorites]


I have a different diagnosis for my fatigue, it's not CFS. But it's really really hard to not just feel like it's all my own fault. Here in my chair I feel completely normal. I sit here and think about what I should do, the things I think I will do. And then I stand up and I fail. I feel like a malingerer.

I can see why CFS sufferers are so angry at the slightest suggestion that their problems are psychological. No one wants to get up and do all the things, more than we sufferers do. How dare other people imply that our problems are in our heads?
posted by elizilla at 8:27 AM on February 15, 2016 [10 favorites]


Part of the problem is that somehow "all in your head" to some people and some physicians sounds like "not real".

The same thing comes up in pain management- it doesn't matter whether the pain is coming from a malfunctioning perception, or from physical injury- it still hurts, and it still needs to be treated.
The only reason it matters is for *how* that treatment happens.

So it's pretty unfortunate that "in your head" gets read, by both physicians and patients, as an insult. Things in your head need treatment too.
posted by nat at 8:53 AM on February 15, 2016 [16 favorites]


One of the few treatments to appear effective in clinical trials is rejected by many patients. Because it focuses on exercise and cognitive therapy, they say it presumes a psychological origin for their illness, which they consider as harmful as it is insulting.

So, based on my reading of the results of the study referenced here (the PACE trial), as well as information provided to me by a friend who is a CFS-ME patient, I think that the reason patients reject it is not because it's "insulting." It's because the study was garbage and the treatment doesn't work for many patients. Critics of the study have identified several significant problems with it. This Slate article does a pretty good job of laying out the problems in layman's terms (it also links to many of the substantive scientific critiques, for anyone who wants to read those).

First, it excluded many of the sickest patients because it counted many of the symptoms they report as symptoms of other illnesses rather than CFS-ME symptoms, and so they were deemed to have excludable comorbid conditions. The study also required participants to visit a doctor and a lab multiple times over the course of the study and didn't provide any in-home treatment, so it excluded any patient who was too sick to get out of bed and go to the treatments. And there are a lot of CFS-ME patients who are too sick to get out of bed.

Second, the requirement to enroll in the study that was published in the Lancet was that patients have a self-reported disability score of 65/100 before the study began. At the outset of the study, the researchers said that they would be counting an end-of-study score on the same scale of 85/100 as "on the way to recovery," and thus a successful treatment outcome. However, when the study was updated (the results that are now presented as the evidence for success of PACE) in 2013, the outcome that was counted as "recovery" was 60/100. Meaning both that a substantial number of patients who were counted as failures in 2011 were successes in 2013, and that it was possible to have been considered ill at the beginning of the study and then recovered by the end, even if you had not gotten any better or had actually gotten worse.

Third, while the study was underway, all of the patients, including those in the control group, were sent a newsletter touting the efficacy of the PACE protocol, including testimonials from other patients and an endorsement of the protocol by a doctor who had conducted an earlier study of the protocol and was also one of the investigators on the PACE trial. That's a huge scientific no-no, and is especially problematic when the protocol you're testing includes a mental health component because of how such information can change patients' thinking. And since the study was not blinded, each patient and doctor who received the information knew whether or not the patient was receiving the treatment that the doctors running the study had just announced was the effective one, or whether the patient was receiving a presumably ineffective treatment. That all happened before patients were asked to self-report at the end of the study whether or not the treatment they had received was working for them.

Finally, a follow-up study was published late last year on the current condition of the PACE study participants. That study found that two years after participating in the study, there was no difference in outcomes among the treatment groups. Almost all of the patients in all treatment groups had improved some, and their functioning in the follow-up study was virtually indistinguishable among the groups, including the control groups. The study's authors said that it must be because the patients who had been in the control groups must have heard about how good the PACE protocol is and started it after the study ended, but they didn't actually ask the patients what they had been up to for the last several years.

It may be that for some patients, CBT and graded exercise are an effective treatment. And we shouldn't discount the experiences of those people, nor should we fail to provide seriously ill patients with that treatment if it works for them. But to say that PACE is an effective treatment is a statement that is absolutely not supported by the evidence. And to discount patients who don't want to undertake an unproven, potentially dangerous treatment that was tested in such a shoddy way as feeling insulted, or insinuating that they're stubbornly refusing to accept that part of their condition may be psychological, rather than realizing that many of them are being reasonably skeptical of bad science, is really disrespectful. This is bad science, and patients have a right to demand good science in researching their condition, and a right to demand not to be shamed for refusing to accept the bad science as good.
posted by decathecting at 8:59 AM on February 15, 2016 [32 favorites]


Chronic Fatigue is a syndrome, not a disease. Which means that the causes may vary.

For some people, CFS may be primarily psychological; fatigue is a big part of my depression, for example, and responds well to exercise (and sunlight). But for others, there may be other underlying causes.

To acknowledge that for some people it may be psychological is not to deny CFS, any more than recognizing depression denies the true suffering.

But effective treatments will, of course, differ based on the nature of the CFS. CBT might do nothing for someone who has a different kind of CFS. (Though CBT might help all sorts of people with coping skills -- it might not make the fatigue disappear but help one cope better).

One issue I've been aware of more recently is the lack of recognition for fatigue as disabling. Fatigue is also a major component of many other diseases and disabilities - and effective treatment differs. Someone with brain damage, for example, may experience fatigue as well as other impairments, due to the extra effort required to use their damaged brain. But for those calculating entitlements to disability supports, many only look at what one can do (eg work) and not at how long one can do it.
posted by jb at 10:32 AM on February 15, 2016 [1 favorite]


Notably, exercise is very good for the majority of rheumatic diseases, particularly arthritis (osteo or inflammatory), which often have significant fatigue as a symptom. It's not surprising that it is recommended for CFS as well, regardless of the underlying causes.
posted by jb at 10:35 AM on February 15, 2016


It sucks to wake up and know that this will be a bad day. A day when everything just hurts as soon as it moves, and all my eyes want to do is close again, but I have to do things because, you know, people have to do things. So I prise them open and get up, and everything hurts. And I shove myself into the shower, and getting in is a fucking chore, and just getting clean makes me stupid tired, so I spend an extra couple of minutes just letting the water beat on my head while contemplating getting out, which is a fucking chore, as is getting dry.

Getting dressed hurts. Lifting my right foot far enough off the floor to get it through the leg of the underpants is some kind of torture. Then there are the boots. Ye gods, the boots.

And I want to go for a walk to try to clear the cobwebs, but I know from bitter experience that if I go for a walk on a bad day, even quite a short walk, then I will have at least two more bad days to follow.

Fuck it, I'm late for work again. Stagger out to the car. Off I go. Coffee in the staff room. Semi-functional after four or five hours of being awake but certainly not before.

I used to have a lot of bad days; two or three a week, on average. I don't any more. Eating a hot chili every day was what made the difference.

Did it for two weeks straight. One little red birds-eye chili first thing before showering, pop it in the gob. Crunch crunch chew chew chew oh my CHRIST that is hot chew chew chew chew AAAAAGH IT BURNS chew chew chew chew chew OH GOD THE SWEATING chew chew chew chew chew chew chew chew swallow and now come the rivers of sweat and the ropey salivation and the five minutes of uncontrollable hiccuping and the lurching stomach and the mouth that just burns and burns and burns. And after maybe quarter of an hour it's mostly settled down but the tongue is not really going to be fit for purpose for at least another hour.

Whatever those little bastards have done to my sinuses and my lungs and my gut seems to have helped a great deal. I don't need to eat them very often any more; maybe one or two days in a row if I can feel a threatening cloud of bad day looming on the horizon. Which is just as well, because the inbuilt aversion therapy is a little hard to take.
posted by flabdablet at 11:11 AM on February 15, 2016 [2 favorites]


elizilla: I can see why CFS sufferers are so angry at the slightest suggestion that their problems are psychological. No one wants to get up and do all the things, more than we sufferers do. How dare other people imply that our problems are in our heads?


There's no clinical argument against the idea that the psychological and the physical are deeply intertwined, but the equation is not weighted the same in both directions.
Emotional stress definitely causes flare-ups in my 'invisible' autoimmune disorder, but a happy stress-free state of mind does not precisely alleviate my symptoms.
What's amazing is how medically selective this thinking is.
F'rinstance: There's a recognized psychological component to the autoimmune disorder rheumatoid arthritis, but one look at the swollen, malformed joints of a RA sufferer and any doctor who suggested that the uffering was mostly in the mind would be laughed out of school.
The difference is that you can't see CFS. We faint, fall down, shake with weakness, slur when we talk, suffer seizures and - oh, a dozen other tricks depending on our personal toolbox, but a visible autoimmune disorder is written on your skin.
For those with invisible illnesses, unidirectional thinking has made it orders of magnitude more difficult to have your actual, verifiable, physical symptoms addressed - or treated.
'Invisible' illnesses have very very good reasons to be wary of the psychological factor. Without the scars, the limps, the stigmata, 'it's in your head' is a code. Very rarely does it mean that someone is going to help you manage the emotional burden of your illness.* It is mostly a warning that a doctor, a friend, a family member - someone who should know better - is about to make a cold, cruel, clinical dismissal.
It is so much easier that way - easier for the medical professional to to avoid the long, hard slog of diagnosis, easier for, easier for the friends and family would otherwise have to bend their hearts really really HARD to face what is going on with you day after day when you look just like you always did and it goes right past 'mind/body balance' into victim-blaming. At warp speed.
Malingering. Selfish. Smile More. Work Harder. It's all in the set of your mouth. It's in your hands.
Angry isn't the word. The searing fires of rage and humiliation feel about right. So yeah. We're wary.
posted by tabubilgirl at 1:11 PM on February 15, 2016 [8 favorites]


Malingering. Selfish. Smile More. Work Harder. It's all in the set of your mouth. It's in your hands.

Too fat: fair enough, with you so far, though it would certainly be easier to be less fat if I could just move more... wait, what? Grieving excessively for the loss of my mother? Buh-bye, Doctor Specialist, and fuck you very much.
posted by flabdablet at 5:27 PM on February 15, 2016 [1 favorite]


One of the most intriguing things about CFS to me is its strong resemblance to post-polio syndrome:
The precise mechanism that causes PPS is unknown. It shares many features with chronic fatigue syndrome, but unlike that disorder, it tends to be progressive, and can cause loss of muscle strength. Treatment is primarily limited to adequate rest, conservation of available energy, and supportive measures, such as leg braces and energy-saving devices such as powered wheelchairs, analgesia (pain relief) and sleep aids.
...
After a period of prolonged stability individuals who had been infected and recovered from polio begin to experience new signs and symptoms, characterised by muscular atrophy (decreased muscle mass), weakness, pain and fatigue in limbs that were originally affected or in limbs that didn't seem to have been affected at the time of the initial polio illness.[2] PPS is a very slowly progressing condition marked by periods of stability followed by new declines in the ability to carry out usual daily activities.[3] Most patients become aware of their decreased capacity to carry out daily routines due to significant changes in mobility, decreasing upper limb function and lung capability. Fatigue is often the most disabling symptom; even slight exertion often produces disabling fatigue and can also intensify other symptoms. ...
...
Numerous theories have been proposed to explain post-polio syndrome. Despite this, there are currently no absolutely defined causes of PPS. The most widely accepted theory of the mechanism behind the disorder is "neural fatigue". ...
...
Finally, it has been proposed that the initial polio infection causes an autoimmune reaction, in which the body's immune system attacks normal cells as if they were foreign substances. Again, compared to neural fatigue, the evidence supporting this theory is quite limited.[9]
...
Epidemiology
Post-polio syndrome occurs in approximately 25–50% of people who survive a poliomyelitis infection.[18] On average, it occurs 30–35 years afterwards; however, delays of between 8–71 years have been recorded.[19][20] The disease occurs sooner in persons with more severe initial infection.[20] Other factors that increase the risk of postpolio syndrome include increasing length of time since acute poliovirus infection, presence of permanent residual impairment after recovery from the acute illness,[19][20] and being female.[21]

Post-polio syndrome is documented to occur in cases of nonparalytic polio (NPP). One review states late-onset weakness and fatigue occurs in 14% to 42% of NPP patients.[22]
Which, since polio is caused by an enterovirus, has led some in the CFS patient community to wonder whether CFS is caused by a polio-like enterovirus.

It's tempting to wonder whether CFS could actually be an attenuated form of polio, somewhat the way shingles is caused by a delayed breakout of chickenpox virus which has been hiding in nerve cells since the initial infection, but as the linked Wikipedia article points out,
Studies have shown that, compared to control populations, PPS patients lack any elevation of antibodies against the poliovirus, and because no poliovirus is excreted in the feces, it is not considered a recurrence of the original polio. Further, there is no evidence that the poliovirus can cause a persistent infection in humans. PPS has been confused with amyotrophic lateral sclerosis (ALS), which progressively weakens muscles. PPS patients do not have an elevated risk of ALS.[6]
However, there is a fairly recent report of an association between Myasthenia Gravis and infection of the thymus by poliovirus, and Myasthenia Gravis is one of the differential diagnoses of post-polio syndrome, interestingly -- and if poliovirus can get into the thymus, which normally functions to prevent the immune system from attacking the body's own tissues, that would seem to make untoward autoimmunity more probable.
posted by jamjam at 9:54 PM on February 15, 2016 [1 favorite]


I have fibro, which would have been dx CFS if I had pain in a few fewer specific points. It was brought on by toxic people at work. Rest and moderate exercise have helped a bunch. Stress makes my body hurt all over, though fatigue is my main complaint (I've also some muscle weakness). There is some reason to think that FM at least is tied to HSV. Anyway, this is most certainly a real condition. The fatigue by itself is debilitating.
posted by persona au gratin at 1:29 AM on February 16, 2016


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