View Full Version : Why do so many people think CFS is fake?


Geno
09-26-12, 03:11 AM
I know a guy with it, 35ish years old. No matter how much he sleeps he always looks and talks like he just crawled out of bed. You can see how exhausted he is in his eyes/body language and hear the monotone/exhaustion in his voice. And it's not like he has an exhausting life. since 20-something he's been on permanant disabiliy and doesn't need to work, and he doesn't use any drugs.

In order to fake that for so many years you'd need more tenacity than someone with CFS would have:P

Kasi
09-26-12, 03:32 AM
Probably because like with ADHD you can't 'see' it. Also the symptoms for both, everyone has had some of them to some degree, so they think they know 'exactly' how it feels, therefore it can't really exist because they could fix it or 'got over it.'
It's kind of like an invisible brick wall, you can show them they keep running up against it and tell 'em why it's happening, but they can't see the wall for themselves, so therefore it doesn't exist.
Very irritating, but that's how some people will always be.

Fuzzy12
09-26-12, 03:42 AM
people are idiots. They think they can draw conclusions from a sample space of one. They just don't care enough to either educate themselves about conditions they don't understand or to at least shut up. I guess being prejudiced is just too much fun. have a friend with cfs and the ignorance and arrogance of others about her problems trouble her almost as much as her symptoms. :(

Geno
09-26-12, 03:47 AM
Well, ADHD isn't as outwardly visible as a problem to people who don't know what ADHD is (read: 99% of the population)

With the man I know with CFS, it is incredibly easy to see how exhausted he is. It isn't depression because he says he's a generally happy person, it's just that no matter what he just feels drained physically. He told me to imagine what you feel like after working out all day (not a good work-out, a "way overdoing it" workout) then getting an hour of sleep and waking up, then always feeling that way.

Verile
09-27-12, 02:07 AM
That sounds horrific. Any idea what causes that?

Drewbacca
09-27-12, 02:57 AM
I agree with fuzzy... b/c people are idiots. Sometimes, doctors are idiots. I served with a guy in the Navy who had CFS symptoms. Over the course of a year they got progressively worse. He saw a doctor at least a dozen times, but no solid evidence of any problems ever turned up. They just assume that it's psychosomatic or malingering.

But, it continued to get worse. He finally received proper medical attention when it became so bad that we pretty much had to carry him to the medics. It turns out he has Crohn's Disease... at long last, the labs started to show them that something was definitely wrong. This, almost a year from the day he first complained of symptoms.

His condition was so bad, that rather than fly him off of an air-craft carrier to a dedicated hospital, they performed a surgery to remove part of his intestines, right there on the ship. Understand that the ship itself only had one licensed doctor, a handful of "doctors" with nursing degrees, and no specialists. The doc was doing his best to perform a surgery the same way that most of use would use a cook book to make dinner.

None of this would have happened, if we showed a bit more trust to a person complaining of an ailment.

dresser
01-10-13, 04:44 PM
here i go again lolo" I'm 71 "-and i can count on one hand the ammount of times I have-ever felt refreshed or well rested when i woke up, no matter how little or much I done the day before.a little humor= I had dropsy and heart trouble ooooo??? yep I'd dropp on my a** and not have the Heart to get up. end of humor except Ibin tired long time. O-drebacca is mallingering the same as goldbrickin???

Lunacie
01-10-13, 05:03 PM
That sounds horrific. Any idea what causes that?

No one knows for sure what causes Chronic Fatigue Syndrome.
I have Fibromyalgia, which is similar, and again, no one knows the cause.

Some of the theories are any of these or any combination of these:


genetic factors
an auto-immune disorder
a virus or an infection
psychiatric or emotional conditions
physical or emotional trauma

caylyn
01-15-13, 09:00 PM
My 17 year old daughter became bedridden for 3 months last January. Dr's finally dx'd her with CFS/ME. She has been house-ridden since then.

As if it is not bad enough for a young woman in 11th grade to become so ill she has to leave school and everything she loves - friends, lighting crew, college classes, the excitement of being a senior the next year - she also has to deal with the funny looks, the laughs, and the comments overheard when she does get out of the house now and then.

People have no clue of the severity of CFS/ME. I try to remind myself that one year ago I also believed that it was simply a fatigue issue. I remind myself of that, and try to be patient with the general lack of knowledge regarding this illness. It is hard. And it is much harder for my daughter.

Unfortunately, I now realize how painful and severe this awful illness really is.

caylyn
01-15-13, 09:06 PM
No one knows for sure what causes Chronic Fatigue Syndrome.
I have Fibromyalgia, which is similar, and again, no one knows the cause.

Some of the theories are any of these or any combination of these:


genetic factors
an auto-immune disorder
a virus or an infection
psychiatric or emotional conditions
physical or emotional trauma


Please understand that CFS/ME is not a result of psychiatric or emotional issues. Depression and anxiety can be comorbid as a result of the person becoming ill, but CFS/ME is not caused by emotional issues.

Last fall President Obama requested that research be expedited on CFS/ME. So many people silently suffer.

Fortune
01-15-13, 09:37 PM
No one knows for sure what causes Chronic Fatigue Syndrome.
I have Fibromyalgia, which is similar, and again, no one knows the cause.

Some of the theories are any of these or any combination of these:


genetic factors
an auto-immune disorder
a virus or an infection
psychiatric or emotional conditions
physical or emotional trauma


This paper delves into possible causes of fibromyalgia:

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0704A&L=CO-CURE&P=R6222&I=-3

I am not sure why the idea that it is a psychiatric or emotional condition has such traction that people keep bringing it up. I think the above paper makes it clear that this is not the case. It is not a mental illness, and it is not somatization.

caylyn
01-15-13, 10:11 PM
If you really want to know about Chronic Fatigue Syndrome/Myalgic Encephalmyalitis, a document was recently published by an international group of CFS/ME experts.

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

The doc includes sections on the etiology and pathophysiology of this illness.

Lunacie
01-16-13, 10:47 AM
This paper delves into possible causes of fibromyalgia:

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0704A&L=CO-CURE&P=R6222&I=-3

I am not sure why the idea that it is a psychiatric or emotional condition has such traction that people keep bringing it up. I think the above paper makes it clear that this is not the case. It is not a mental illness, and it is not somatization.

Holy cow! That's a lot of information in that paper.

But it looks very interesting and informative. Thank you Fortune.

I'll read it in bits and pieces.


Just to be clear, I wasn't saying I believe that any of those things actually cause
either FM or CFS, only that they are theories that have been considered.

I actually developed FM before most doctors knew anything about it, back in 1970,
back when FM and CFS and PMS were considered to be hysteria based on our hormones.

SquarePeg
01-16-13, 11:07 AM
I had CFS for over 15 years and can assure you itīs very real, though nobody really believed me.

caylyn
01-16-13, 02:02 PM
I had CFS for over 15 years and can assure you itīs very real, though nobody really believed me.

How did you recover? Did you use GET? Do you still have to pace yourself, or have you completely recovered to your pre-illness health?

SquarePeg
01-16-13, 02:46 PM
How did you recover? Did you use GET? Do you still have to pace yourself, or have you completely recovered to your pre-illness health?
Long story, I will try to keep it short. Because I was constantly told that there was nothing wrong with me by my gp and that it was in my mind I made myself exercise everyday and ignore how I was feeling. I only started to get better when I "gave into it". Thatīs not to say I lay down and did nothing, but started to listen to my body and rest when needed. I could see a pattern forming. If I worked late one night at work then the 2nd day after I would be really bad. If I exercised, I would feel exhausted. When I had good days, instead of doing loads of things, I took it easy. IT was hard because I was always optimistic. If I felt good, I just took it for granted that I would feel good the next day, I seem to forget that I would feel so bad if I didnīt rest. I didnīt seem to learn. It took me years.
Gradually I improved. Instead of feeling ill every day, it would be 6 days a week, and then 4 or 5. Then maybe twice a week. The severity and duration of symptoms gradually lessened but it took a long time.

At one time I was convinced I had cancer and was going to die in my sleep. I didnīt even care if I died, I wanted to die because I felt so ill and nobody could help me. I didnīt want to live like that. I saw quack after quack. I had Chinese medicine, reflexology, some electric treatment, you name it I tried it.

Tt started after a bout of glandular fever. I had glandular fever when I was 13, diagnosed by a lab. Then I had it 3 times after that. There have been links to the epstein barr virus that causes glandular fever and the onset of CFS but I donīt think it is conclusive.

Lunacie
01-16-13, 02:57 PM
I don't know where I got this idea, but I thought that something Epstein-Barr
or Monoleucleosis don't cause CFS or FM, but they somehow trigger it.

I had Mono when I was 19 and it was after that I began having FM symptoms.

SquarePeg
01-16-13, 02:59 PM
Lunacie, I meant to say that but I didnīt make myself clear. Yes it is thought to be a trigger for cfs and fm.

Fortune
01-16-13, 04:15 PM
I had mono when I was in the 7th grade. I may have had FMS symptoms after that point, although I think they got noticeably worse several years ago, long after I'd had mono. I did have other stuff going on that could have exacerbated things.

caylyn
01-16-13, 06:11 PM
I don't know where I got this idea, but I thought that something Epstein-Barr
or Monoleucleosis don't cause CFS or FM, but they somehow trigger it.

I had Mono when I was 19 and it was after that I began having FM symptoms.

Yes, it is documented - including for my daughter - that for some people, the onset of ME/CFS does coincide with the Epstein Barr Virus, or with vaccinations, or other virus's (virii?).:scratch:

But, not all ME/CFS patients had a virus, or a vacine. Also, there are many healthy people who had mono/epstein barr virus and are lucky enough to recover from the mono.

My daughter's best friend recovered from mono. My daughter has been ill for one year. Funny thing, we did not even know my daughter had mono. We only learned of the mono by the epstein barr antigens in her blood tests. The doctor estimated that she had mono about 4 months before becoming so seriously ill.

avjgirsijdhtjhs
01-16-13, 06:28 PM
Pulse oximeters (http://www.addforums.com/forums/showpost.php?p=1401307&postcount=9) can help with cluing a person in to the possibility of sleep apnea.

caylyn
01-16-13, 06:32 PM
Long story, I will try to keep it short. Because I was constantly told that there was nothing wrong with me by my gp and that it was in my mind I made myself exercise everyday and ignore how I was feeling. I only started to get better when I "gave into it". Thatīs not to say I lay down and did nothing, but started to listen to my body and rest when needed. I could see a pattern forming. If I worked late one night at work then the 2nd day after I would be really bad. If I exercised, I would feel exhausted. When I had good days, instead of doing loads of things, I took it easy. IT was hard because I was always optimistic. If I felt good, I just took it for granted that I would feel good the next day, I seem to forget that I would feel so bad if I didnīt rest. I didnīt seem to learn. It took me years.
Gradually I improved. Instead of feeling ill every day, it would be 6 days a week, and then 4 or 5. Then maybe twice a week. The severity and duration of symptoms gradually lessened but it took a long time.

At one time I was convinced I had cancer and was going to die in my sleep. I didnīt even care if I died, I wanted to die because I felt so ill and nobody could help me. I didnīt want to live like that. I saw quack after quack. I had Chinese medicine, reflexology, some electric treatment, you name it I tried it.

Tt started after a bout of glandular fever. I had glandular fever when I was 13, diagnosed by a lab. Then I had it 3 times after that. There have been links to the epstein barr virus that causes glandular fever and the onset of CFS but I donīt think it is conclusive.


Squarepeg, thank you so much for taking the time to reply.

Oh, how I empathize with you. And I am just the mother watching and supporting her daughter. Even I have no idea how devastating this illness is to young, vibrant people who become so ill.

My daughter was 16 when dx'd. I have watched her go through the same things you have mentioned. She is now at the point of some acceptance - without losing hope of recovery. That helps, because now she is pacing herself with the understanding that she has about 2 hours a day out of bed.

She was somewhat lucky with the dx'ing. It took 8 weeks of taking her back to the clinic and insisting something was wrong. After my daughter literally slept for 3 weeks, the doctors finally agreed something was going on.

She was eventually sent to a specialist - the head of Pediatric Infectious Diseases. Now, if that title doesn't scare the poop out of you. This doctor has worked with kids dx'd with ME/CFS for 30 years. He was able to dx her that day after reviewing the different tests.

PS Right before my daughter became bedridden, I was in the process of having her checked for ADHD. So now she has the cognitive impact from the ME/CFS, and she most likely is ADHD.

Thank you so much for sharing some of your story. Your recovery, even at 15 years, is still encouraging.

caylyn
01-16-13, 06:35 PM
Lunacie and Fortune,

Do you have FM now?

Fortune
01-16-13, 10:29 PM
Yes, I have fibromyalgia.

namazu
01-17-13, 01:24 AM
The CDC has a fairly informative page on (plausible/speculated/being-looked-at) causes of CFS: http://www.cdc.gov/cfs/causes/index.html

They mention that there's no single virus overwhelmingly associated with triggering it, but that a subset of cases do seem to be associated with the chronic or after-effects of certain viral infections.

As to why people think it is fake or "all in people's heads" -- I think it is one of the modern-day analogs of "hysteria" and other such labels historically applied to poorly-understood, difficult-to-measure conditions that seem to affect more women than men. (Note: I am not saying CFS is equivalent to hysteria! Just that those who dismiss it seem to treat it in a similar fashion...as an unusual problem of psychologically-unstable women, not worthy of serious research or compassion.) That and a culture in which there seems to be a great deal of concern about malingering, leading to skepticism about anything that cannot yet be conclusively diagnosed by laboratory tests or imaging.

SquarePeg
01-17-13, 04:10 AM
Caylyn - a big part of my problem was that in the UK very little was known about this, so I kept pushing myself instead of resting. Just getting up for work wore me out and I would arrive at work and then crash out on my desk if my boss wasnīt there.

I hope she makes a good recovery. Some people recover quicker than others and I think there is still a lot more than needs to be discovered about cfs.

I am 47 now and still have to pace myself. If I have a party weekend away with the girls, I suffer for up to 2 weeks afterwards and sometimes I feel itīs just not worth it.
Itīs great she has parents that are very supportive and docs that know what they are doing.

Another thing that may or may not be connected is that I was diagnosed with an underactive thyroid gland at 36. A specialist told me that this is common with people who have had severe glandular fever. Something triggers the body to attack the thyroid.

sarahsweets
01-17-13, 06:19 AM
I think that any illness that some bone head doctors cant do a blood test on gets ignored,mistreated and blown off.

Lunacie
01-17-13, 09:36 AM
Lunacie and Fortune,

Do you have FM now?

Yes. It's mostly in remission, but I do have flare ups from time to time,
when I've been sick or when I've overdone.

I don't know why it went into remission. I've wondered if reducing stress
(got a divorce) or starting to take Omega 3 and Vitamin D3 helped somehow.

Maybe I just learned to pace myself.


I think that any illness that some bone head doctors cant do a blood test on gets ignored,mistreated and blown off.

^ I think that's true far too often.

Special-Ks
01-19-13, 05:48 AM
I think it's because everybody knows what it's like to be tired. But when most people experience fatigue, they recover from it without much disruption to their lives.

So they expect everyone else should be the same way. Only having experienced their own level of fatigue, these people are unable to relate when hearing of debilitating fatigue like with CFS. So unfortunately this may lead to you getting medical advice from this person, or hearing about how they pulled off an epic all nighter and were able to recover from the tiredness one time, so clearly you should be able to as well.

Or, per my doctor's theory, it's because it's a complex problem that many doctors don't know how to approach, so they deny it/dismiss it.

I have been tired of these people for at least a period of 6 months, so there ya go, CFS is real. :lol:

sarahsweets
01-19-13, 08:37 AM
I think that any illness that some bone head doctors cant do a blood test on gets ignored,mistreated and blown off.

It also happens to be easier For Doctors to put their ENOrMOUS (yet in some casses clueless) brains together to whisper amongt's; themselves.... :("needs a psychiatrist She needs to exercise more. hope she doesn't think she is walking out of her with pain meds again...women are so emotional. We should tell her to go to therapy.")

having to fight a sometimes chauvnistic,dismissive doctor combined with exhaustive amounts of physical test, while also having to explain why advil doesnt cut it and tylenol does which is why you need something stronger...make CFS or even EB worse.

Special-Ks
01-19-13, 05:25 PM
It also happens to be easier For Doctors to put their ENOrMOUS (yet in some casses clueless) brains together to whisper amongt's; themselves.... :("needs a psychiatrist She needs to exercise more. hope she doesn't think she is walking out of her with pain meds again...women are so emotional. We should tell her to go to therapy.")

having to fight a sometimes chauvnistic,dismissive doctor combined with exhaustive amounts of physical test, while also having to explain why advil doesnt cut it and tylenol does which is why you need something stronger...make CFS or even EB worse.

I remember before my sister (who has CFS and Fibro) moved to Florida, our family doc warned her that it could be difficult to find a doctor who understands these conditions, and he said younger doctors especially have a tough time, since they often feel the need to prove themselves and show off their knowledge, and these conditions are difficult to treat.

The first time she saw a doctor, he didn't seem to be aware of these conditions and questioned why she was on a "Cocktail of pain meds." He wanted to see records from the old doc before discussing anything (and wanted to charge by form).

So our family doc here in Ca ended up just calling in her prescriptions for her in Florida. There's good docs, and there's bad docs!

Fortune
01-19-13, 08:25 PM
I found it interesting when my former PCP informed me that my fibromyalgia was in no way impairing.

When I tried to point out the pain I am in somewhat regularly because of it, she said it doesn't really count as impairing a second time.