Chronic fatigue syndrome

First of all a disclaimer, I suffer from this illness and so this writeup may lack objectivity. However, in compensation I hope it's a little more insightful than a cut-and-paste job from a medical encyclopedia and I offer some practical tips to survive this illness.

Myalgic Encephalomyeltis (or ME) and Post Viral Fatigue are synonyms for chronic fatigue syndrome. It is also popularly known as yuppie flu although it is not influenza and does not only affect yuppies.

The illness is usually characterised as (profound) fatigue unrelieved by sleep that persists for more than six months (even small amounts of exercise are very tiring). This assumes that other illnesses (that can easily be tested for using blood work etc.) have already been eliminated. cfs is often, but not always, preceded by a viral illness.

At this point it should be clear that cfs is something of a dustbin diagnosis, i.e. it's what they say you have when they can't think of anything else. There is no test for cfs. It seems unlikely that there will be a great deal of progress in understanding this condition until there is a test. It seems a reasonable hypothesis (especially considering variation of symptoms) that not all people diagnosed with cfs actually have the same illness.

Symptoms very between sufferers. Not all patients experience all symptoms although everyone experiences fatigue. The next most common symptom is muscle and/or joint pain. This can be very severe. Many people experience problems with concentration and a feeling of being mentally dazed. It is quite common to experience a reactive depression. Not surprising considering what's happened. Other symptoms include insomnia, nausea, raised temperature, swollen glands. Severity of symptoms varies widely. Some people are bed-bound and need full-time nursing care. Other people are able to continue working but most sufferers will have to give up full time working during the illness.

Proven Treatments

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The prognosis is quite varied. Some people recover quite quickly within a year whereas some people do not ever fully recover. The average recovery time is 5 years.

There are four main theories as to the cause of cfs. All of them have some serious problems describing all of the cases, all of them have little scientific evidence to back them up. The short version: it's anybody's guess.

• Enviromental cause

  Little investigated but there are some striking similarities to gulf war syndrome and organophosphate poisoning.

• Persistent virus

  As the name suggests this theory posits that the illness is caused by an initial virus which persists. The weakness in this theory is that not all cases start with a virus and that there is no evidence that viruses can persist. The advocates of this theory tend to be most willing to admit they have no treatment. They suggest taking exercise as you feel able and taking increasing amounts of exercise as recovery progresses.

• Systemic fungal infection

  Here the idea is that the illness is caused by a yeast infection, sometimes called candida. Such systemic fungal infections certainly can occur, for example in aids patients. Unfortunately, these systemic infections do not seem to be visible in cfs patients. The advocates of this theory no doubt have explanations for this but by now I'm nervously looking for the exits. It's science Jim but not as we know it. The suggested treatment here is dietary (avoid refined carbohydrates that will feed the infection and also avoid fungals such as mushrooms) combined with powerful anti-fungal drugs.

• Psychiatric condition

  This theory tends to be popular with psychiatrists. Advocates will usually suggest a treatment based on cognitive therapy and/or antidepressants and graded exercise. It is important to note that there is no evidence that this actually works. Further, overexercising can certainly cause a deterioration in the patient's condition, so this approach can be dangerous. Noether would like five minutes in a locked room with a baseball bat with those who favour this theory.

Tips to survive cfs¹

• In the initial stages of the illness do as little as possible. Take it easy. Your best hope for a quick recovery is not to worsen your condition now.
• Try to take some exercise but do not overexercise. It is important to listen to your body. Try to rest before you get tired not afterwards.
• Do around 50% of what you feel able to do each day. This can be very frustrating but overdoing it is the way to relapse your recovery or worsen your deterioration.
• Do all activities in bursts with rest in between. Don't do anything for longer than 30 minutes.
• Learn some relaxation techniques, like meditation.
• Remember that most doctors are totally clueless about cfs and trust yourself before you trust them.
• Alternatively, blindly follow the instructions of your doctor and hope for the placebo effect.

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1. Noether should learn to follow his own advice.

(this is as an addendum to the above post)
Many, MANY, people diagnosed with CFS in reality have Lyme Disease. Look into this at lyme.org or anything not Yale or Stonybrook, especially if you live in the New England area. I can't back this up with a statistic, but many people I know who were initially diagnosed with CFS in actuallity had Lyme. They spent years sick before they found out. One cautionary note: don't be supprized if your doctor refuses to even test you for Lyme, or if you get a false negative, or if you get a positive and your doctor tells you it's a false positive. It's all part of the crap surounding Lyme today, thanks mostly to Yale University and some corporations.

Again, I think I'll start with a disclaimer on this one... I suffer from Chronic Fatigue, so somethings that I write here may not be 100% objective, but I'll try :-) I'm also not going to go into all the symptoms that I had, as this has all been done so well in the above post.

To start with I was feeling tired a lot, but never had a reason for it. I thought it was partly pure laziness, while at the same time I was feeling ill. It's not at all pleasant. Before I was diagnosed with chronic fatigue, I also had to have an operation for something completely different, and so to begin with my then-doctor thought that it could have been to do with that. But no. After the operation I was still feeling down all the time. I also suffered from what the doctors thought was gladular fever, but the tests proved negative and so that was ruled out. However, a year later I find from different tests that I have had the virus that causes glandular fever at some point within the previous 2 years or so.

I then had a bad summer, complete with the flathunting from hell, at the end of it I was finally convinced to go see the doctor by my partner and a couple of friends. The doctor I saw then, thought it was maybe depression but she said that first she wanted to rule out any physical causes for how I was feeling.

This then caused a year of blood tests, x-rays, ultrasound and various different doctors, in some sort of hope of coming up with an explanation. No such luck. Eventually, just before Christmas, my new doctor said that she would like to try giving me anti-depressants to see if it could help me feel better. The one she has given me is an SSRI (or selective serotonin reuptake inhibitor for those who want to know these things :-), and it is beginning to have an effect, I feel. The reason she chose this, was because it was the type of anti-depressant that has some evidence of helping sufferers of chronic fatigue. Also she said that if, as the original doctor thought, I was depressed and that was causing the fatigue, then it would help that. But the difficulty there is that there was no way of knowing whether I was depressed because of the fatigue or vice versa.

I saw her today, and she said that I was beginning to see the balance changing of moods as the drug began to take effect. She also said that it is going to take at least 6 months before I begin to notice myself getting back to normal.

The thing is though, that I've almost forgotten what normal is, as I've been dealing with this for so long. I would not choose to inflict this on anyone, for people who are used to being active and getting out to do things it is incredibly restricting. This in turn makes you feel worse as the doctors can't give you any real reason why you don't have the energy to do the things you are used to doing.

If, like me, you like to know the cause of something, this is most irritating. The doctors can't tell me why I am fatigued, it could have been to do with having Epstein-Barr Virus (EBV - the virus that causes glandular fever), it might have had nothing to do with it.

I also noticed a huge downfall in the length of concentration time from before and after the time I have been suffering from this. I have also noticed a similar decrease in the standard of my course work and exams at uni. I had to resit a year due to this, and am still not doing that well in everything. While I am enjoying the studying, I don't find it easy. Luckily for me, the university seems to be fairly considerate of the problem, despite the fact that my Director of Studies tends to ignore my emails...

I know that I will get better, but when I have a bad day I feel like its not going to go away. It is definitely not a pleasant condition. Hopefully the treatment I am having will take more effect, and I will start to feel a lot better.

I'll add my two cents here, not just to confirm what others above have said (which is all true), but to maybe help those suffering with CFS in college, or those who don't know if they have it or not. Hope any of this helps, and please /msg me if you want to talk about it.

I'm 24 now, but had CFS starting midway through my freshman year of college and lasting mostly through those 4 years, with the worst coming freshman and sophomore years. It took a term of missing classes due to sleep and collapsing grades to finally go to a doctor. As others have had happen, I was misdiagnosed completely several times.

First I was told nothing was wrong...twice. Then was told that I wasn't sleeping well because I drank soda. OK, so I stopped drinking soda. Then was told I was tired because I was depressed (it never entered the doctor's mind that it was the other way around). And so on. The most important piece of advice I can give is trust your body! You know what your "normal" is and you know when something's wrong. Just because a doctor (or two or three...) tells you "you're fine...just get to bed earlier", don't necessarily believe it.

As far as classes, I never wanted to tell any profs about it, because I didn't want to be treated differently. This was probably a mistake. The one professor I did tell (because she gave pop quizzes during classes, and I had missed the first two, since I was asleep) was understanding and let me write extra essays in place of the quizzes. The thing is, you should tell a prof sooner rather than later, or they'll think you're just making up excuses for bad grades (especially since, as has been stated, doctors don't really confirm CFS).

As far as scheduling, again you know your body. You know your limits. I knew that I was sick and could never wake up for a 9 or 10 AM class, so intentionally scheduled all 11 AM or afternoon classes. I still missed some of those, but not as many as if it was at 9 AM. Also, I knew I couldn't deal with labs, so chose classes that focused more on essays. Adapt your schedule to your illness. It's not ideal, but it doesn't do you any good taking a 4-hour biochem lab, followed by 2 hours of iceskating.

Trust yourself. You'll get through it. I'm from the "everything happens for a reason" train of thought. In my case, I was a biology major, with plans on being a researcher. Due to the illness, I became a communications major. In retrospect, I would have never switched to that if I wasn't sick. Now I'm very happy, while my friends who toil counting fruit flies are miserable. Being sick might have been the best thing to happen to me. I understand myself, physically and emotionally, better than I ever did. Keep the faith.

Here is a list of common symptoms and/or other disorders present in people diagnosed (or self-diagnosed) with CFS. I can't really credit this, since it came from a bunch of different sources.

- fatigue (NO! REALLY?)

- short-term memory loss

- inability to concentrate (also see Attention Deficit Disorder, a common co-diagnosis)

- occasional numbness / tingling in extremities / muscle twitchiness, pain, weakness

- lightheadedness / dizziness / fainting / loss of balance

- headaches

- depression / anxiety / panic

- abdominal pain / digestive disorders / gas

- blurry / dry eyes

- insomnia / unrestful sleep / frequent need for sleep

- allergies

- asthma

- thrush (a pasty white or yellowish coating on the tongue)

SSRI Complications With CFIDS:

Many people with CFIDS/ME take SSRIs also known as (Selective Serotonin Reuptake Inhibitor). The reasons for this are usually to control depression; sometimes as a prescription from an unenlightened doc who thinks it's all in the patient's head.

One of the many symptoms of this strange neurosomatic disorder is the potential to be oversensitive to medication; especially SSRIs. It is reccomended that people with CFS/CFIDS/M.E. try a tricyclic antidepressant first, and no matter what, always start with very low dosages

Nobody knows exactly why this happens, but it's believed to be a result of the brain traumas that very often precede an onset of the syndrome. See Myalgic Encyphalomyalitis for a more detailed look.

My personal experiences are included below for reference:
On prozac I was extremely jittery. It looked as if the whole world was vibrating. Adrenaline coursed through my system; I would clench my fists out of fear and almost rageful mania and it was all I could do to keep myself under control. It was like some little gremlin was going through my mind and hammering every bit of it.

On Zoloft I lost a tremendous amount of weight; you could say I became anorexic (note: narzos tells me that Anorexia Nervosa is the diagnosis given to people with distorted body images, which I did not have. ) Being thin may have been a control thing during the circumstances, I'm not sure. Needless, it didn't help that I was extremely nauseated on the beast. Anxiety quadrupled, which was ironically one of the things it was trying to control. Life went on, anyway...

The topic of medications is always a touchy one for suffers of CFIDS. Some people enjoy the removal of symptoms that modern pharmaceuticals provide, however there is a large number who believe that the benifits are not worth the oft unpleasant side effects and general numbness that the more potent sedativie anti-anxiety meds can cause.

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Update:

I have read that SSRIs are now being used as an immunomodulator. In either case, doses much smaller than even the lowest therapudic reccomendations are prescribed.

The thing that has helped me most in coping with CFS over the last two years has been to successfully educate the people around me. Chronic Fatigue is a very unhelpful name for the condition because people hearing it tend to assume you are just really tired and wish you a good night's sleep, which does no good. If you can get them to understand, to have realistic expectations of you, and to do the things that take the stress away, it makes a huge difference.

The best way is to get someone who knows you well, your parent, best friend, carer etc, to chat with your boss, colleagues, friends, tutors etc. I survived university on the strength of the fantastic note that my doctor wrote to my director of studies.

Disclaimer: the information below is mainly about my experience with CFS, not CFS in general.

"The thing is though, that I've almost forgotten what normal is..."

I can relate to that. I've had this 'mystery fatigue' for a while but now, after quite some time, I can feel myself slowly getting better.

When I first started feeling unwell, it was bloody awful! I, too, had forgotten what 'normal' was and it was a horrible feeling.

Now I'm gradually feeling better. I'm feeling almost 'normal' and boy does it feel good (though there are still times when I don't feel that great, but it's not half as bad as before).

To anyone with this horrible illness: stick with it. Don't worry about anything for now, just try your best to keep healthy, etc. 'Coz when you start feeling normal again, you'll look back and think, "Wow, was I really that bad?" and then, "I sure am glad I'm feeling better now."

The problem I see with what they call CFS is that, like Noether mentioned, it's a kind of 'dustbin diagnosis'. Therefore a group of people with this CFS may have completely different illnesses.

For anyone who's interested, here are the two biggest things that I believe have helped to make me feel better:

• Not eating any sugar at all. This is one of the first things I tried after reading books about Candida Albicans. After a couple of weeks of no sugar I could think clearer than I had been able to since the illness began. Note: it's best to consult a dietitian or similar before making big changes to your diet.
• Taking acid supplements (Betaine Hydrochloride). I felt very different soon after I started this. Kept with it for a while and started feeling better. I believe this has helped massively in making me feel better. For one thing it's helped with the food sensitivites which used to affect me quite badly.

Other things which have helped are: avoiding foods I'm sensitive to (doesn't seem so important nowadays :-) and taking extra vitamins like Vitamin C and several others.

I posted this 'coz I wanna let people who have this illness know that when you start feeling more normal again, it feels great. It almost feels like you're living in a different world.

Alright I think I've rambled on enough. I don't usually ramble on about anything so personal, but this is something that has affected my life in a big way, and I'm sure it has affected others similarly.