Mind games

An interview of my friend Anna, done in the spring of 2010. Her name has been changed and some minor details have been changed/omitted to protect her privacy, but everything else is 100% true.

At first it was known as atypical polio or epidemic neuromyasthenia (myasthenia means muscle weakness). Epidemics were first reported in the 1930s and from the beginning it was clear this was an infectious neurological illness. In the 1950s most doctors started using the name myalgic encephalomyelitis or ME, for a painful inflammation of the brain and the spinal cord.

In the 1980s multiple epidemics took place in the United States. There had just been a major scare about AIDS and the authorities didn't want to frighten people with another mysterious illness. ME was reborn under the laughable name of chronic fatigue syndrome. Soon it became known as "yuppie flu", suggested to be neurotic workaholics' overreaction to normal everyday ailments.

Many still believe that frantic and perfectionistic "type A" personality is a risk factor for CFS/ME, even though research does not support this idea. One study found CFS/ME as common in Nigeria as in the Western world. Still, considering that rest is the best treatment for CFS/ME and exertion is dangerous to the ravaged body, it is possible that certain personality traits increase the risk of developing CFS/ME after an infection, or worsen the prognosis.

"I just assumed I had suddenly become lazy and indolent, as before getting sick I was exceptionally vigorous and active", says Anna, 21. "I always try too much. I always do too much. I blame myself too much. Only recently I have managed to really digest the fact that I'm not lazy but sick. That I really am not capable of doing more."

***

Anna lives in a large Finnish city. As a child she suffered an infection after another. It didn't stop her from being an active athlete - she played badminton, jogged, skied and rode horses. Later she biked and rollerskated, with the occasional muscle training and pilates, and ran 20-30 km distances almost daily.

In 2002 there was an infection that didn't get better. Anna had got CFS/ME, even though she didn't know it for many more years. In CFS/ME symptoms typically worsen drastically after any kind of exertion, which Anna soon came to find. Instead of feeling good exercise made her feel horrific. It worsened the neurological and cognitive symptoms, impaired circulation and caused massive headaches.

"For a long time I thought I was living a normal life. I thought that others had an equally hard and difficult time getting on, but they must have been more diligent while I was a sorry loser. A senseless train of thought considering how horrible I already felt at the time, but it has been very hard for me to understand I am sick, not just lazy."

Doctors never forbid Anna from exercising, even though her health continued failing. As an exercise nut she was only happy about their laxness. Eventually, however, she was forced to put a stop to it. Even one heavy bout of exercise could worsen her symptoms for months, even if the exertion was nothing compared to her previous lifestyle.

"After even the lightest session I was in such a bad shape that calling an ambulance would have made sense", Anna reminisces. She realizes she's lucky that she didn't get herself killed with exercise, as has happened to some CFS/ME patients.

***

Now Anna couldn't even dream about her previous 20 kilometer runs. On most days she doesn't have the energy to go out at all and she has had to move back to her family. She made a New Year's resolution to herself that she'd try to at least brush her hair every day, but hasn't been successful.

Many of Anna's symptoms sound unusual, but are typical of CFS/ME, such as severe oversensitivity of senses and chronic fever. She's always feverish, but any kind of exertion raises her temperature further. Because of CFS/ME she has become allergic to most foods, including almost all vegetables and grains. She also has severe lung issues, which have been diagnosed as asthma, but more closely resemble COPD, a deadly lung condition usually only seen in smokers.

As is usually the case in CFS/ME, Anna is not just physically debilitated. Even thinking exhausts her. It hasn't been an easy thing to come in terms to for someone who was not only an avid athlete, but also loved language studies, writing and linguistics. She also excelled in math, but now that is impossible, too.

"Gradually losing my writing and speaking abilities has been horrifying, especially since I had no idea what was causing it. I just thought I must have suddenly become lazy and stupid."

Giving up exercise helped the cognitive impairment a great deal - it used to be so bad she'd forget names of her family members after exercise and could not speak properly - but even now she is unable to read fiction and has to do with comics. Watching movies is out, as well.

"If I try to do something too cognitively challenging, like trying to remember a single multiplication or read fiction for more than a minute, it feels like my brain just shuts down."

***

A few years ago the reason for the constant infections was uncovered. Anna has had immune deficiencies since her birth, conditions which are also identified by three-letter acronyms, though to doctors they sound much more serious than the unfortunate "CFS".

Yet strangely the later appearance of the CFS diagnosis in Anna's files has made the doctors forget about her immune deficiencies, hormonal problems and other illnesses. They used to be concerned about her increased risk of leukemia, now they tattle about "hidden depression" and have decided that she has an eating disorder.

"Although losing your health is obviously awful, especially when you're young and very enthusiastic about building your own life, the hardest thing I've faced has still been the belittling and unprofessional attitude of doctors", Anna says.

Anna used to have blind faith in doctors. It is easier to let someone convince yourself that you are fine than face the possibility of being seriously ill.

"After the worst symptoms started I had some bloodwork done, but doctors said they were OK and I was perfectly healthy, I refused to even consider the possibility that maybe something was wrong."

Besides anorexia nervosa and depression doctors have blamed her symptoms on e.g. a cold, "perfectionism of young women" and school stress. Spirometry results that pointed to COPD were explained as her "not knowing how to use the meter". Other abnormal test results were simply "normal enough".

One doctor wrote in her file that "the patient has no remarkable physical symptoms." An internist asked if Anna had ever considered that maybe she wasn't really sick. Years after she fell ill Anna saw the results of the initial bloodwork and they definitely weren't "OK".

"The most asocial and uncooperative people I've met have been doctors", Anna says. "No one else has ever hurt my feelings as badly as doctors. No one else has made me cry at a public place. To be honest what I probably fear the most at the moment is doctors and ending up in a hospital at their mercy."

***

The immune deficiencies Anna suffers from are treated with intravenous immunoglobulin, which is often also an effective treatment for CFS/ME. Anna tried it in 2007, but as a result her health deteriorated. Later she found out that the doctors should have known in advance that this particular brand was incompatible with her condition.

One thing that has helped a bit has been low dose naltrexone or LDN, which Anna has used for a little over a year. The treatment boosts the immune system, but sadly cannot amend the kind of immune dysfunction she was born with. LDN has helped her the most by toning down the sensory hypersensitivty. Her lung symptoms, food allergies and severe headaches are also somewhat better.

Thyroid hormone and a tiny dose of hydrocortisone have also reduced her symptoms. Asthma and allergy drugs, some other medications and some supplements have helped, too. One important treatment has been her low-carb diet, further limited by her various food allergies. Anna was hopeful that ozone therapy would help treat her chronic infections, but unfortunately it was of very limited benefit.

At the end of 2009 Anna was able to start immunoglobulin again, this time with a different product. However, even this new brand makes her feel more ill, as her immune system is waking up from its prolonged slumber and finally starting to fight against the infections running rampant in her body. It could take a year or more before any benefits can be noticed.

There is plenty of evidence to support the use of immunoglobulin and many other pharmaceuticals in CFS/ME, but officially only two treatments are recommended: cognitive psychotherapy and exercise. Even the use of psychotherapy is based on the idea that patients are needlessly avoiding exercise and exertion, suffering from "kinesiophobia".

"Scary, insulting, absurd, totally sick", Anna rebuts the concept. "I really don't believe that anyone with CFS/ME enjoys lying in bed. I hope that one fine day when the real nature of CFS/ME is widely known, doctors who have used these treatments will be held responsible for destroying the health and lives of so many patients."

***

"[Living like] this is pretty horrible", Anna admits, yet she insists she really enjoys life, "even though at times I feel pissed off, to put it mildly".

"I don't try to be positive if I don't feel like it, especially since I am positive 99% of the time anyway, so I can well be something else the remaining 1% of time."

In the difficult situation Anna finds strength in her family and friends. Illness has also given her perspective to life.

"Very few things make me scared or anxious any more. Being ill and the risks associated with it no longer get me down much, not to mention smaller issues, like things related to studying, work, relationships or external achievements. I have understood what life really is about and I no longer feel a similar need to accomplish and be successful as I used to."

Anna doesn't believe in any higher power, but perhaps surprisingly she considers it another source of strength, together with the lost trust in the medical profession. She, and she alone, is responsible for her life and health. Attitude does matter - not because positivity itself improves your prognosis, but it is needed to keep up the fight despite the aloofness of doctors.

"If you don't really believe in a better future, it is very unlikely to get well, because a person who has lost hope rarely ventures actively into new treatments."

Anna doesn't have a shortage of ideas of what she would do if she suddenly got well. Running? A bike trip with friends? Horseriding? A Spanish course? Writing a novel? To the library? Maths and other kinds of brain exercise? Learning karate? Interrailing? Still, it's everyday life she yearns for the most.

"The first thing I'd do would probably be to go outside and enjoy the sun for the first time in a long while without the light hurting my eyes - and I'd probably burst into tears", Anna ponders. "Even just thinking about that made me feel like crying. It's the small things that I miss."

"Health feels like a miraculous and wonderful thing - and actually something achievable. Most likely the road won't be an easy one, but with persistence I think I'll find my way there."