Presidents in Their Own Words Too Attached to Words

Chronic Fatigue Syndrome

Print Version November 8th, 2006

Chronic Fatigue Syndrome (CFS) is a strange and nasty and underestimated illness. I’ve been suffering with it for the last five years or so. The US Centre for Disease Control has just produced a detailed web site on the subject.

What is CFS? Doesn’t everybody get tired out? The CDC says this:

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it’s not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It’s a severe, incapacitating fatigue that isn’t improved by bed rest and that may be exacerbated by physical or mental activity. It’s an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

On top of the fatigue the CDC lists a raft of other symptoms, among them (just the ones I’m familiar with):

  • cognitive dysfunction, including impaired memory or concentration
  • postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
  • unrefreshing sleep
  • joint pain (without redness or swelling)
  • persistent muscle pain
  • headaches of a new type or severity
  • sore throat
  • irritable bowel, abdominal pain, nausea, diarrhoea or bloating
  • brain fog
  • chest pain
  • shortness of breath
  • chronic cough
  • visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
  • allergies or sensitivities to foods, alcohol, odours, chemicals, medications or noise
  • difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
  • psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
  • jaw pain
  • weight loss or gain

I’m taking part in a CFS treatment programme based at the Royal Liverpool University Hospital based on a model of the illness as a physical dysregulation. The idea is that, for whatever reason, three major systems run out of control. The body clock loses sync with the normal day night rhythm shifting fatigue in to the daylight hours and depriving the body of the deep sleep it needs to recover mentally and physically. As a result, sufferers prioritise their activity and find a level of physical effort that minimises their symptoms. Over time the cardio-vascular system becomes massively deconditioned and muscles become depleted in mitochondria, the power plants of the cell, adding a second source of abnormal fatigue. To keep going at some reduced level the body compensates by abnormal nervous system arousal. Sufferers run on adrenaline with nasty side-effects.

That’s the theory. Intervention is aimed at each of the three problem areas. Relaxation techniques, abdominal breathing, pacing, ‘power rests’, and a certain amount of CBT-style corrective thinking attack the adrenaline production. An amount of rigour about sleep habits, a careful routine of rising, eating, activity and rest aim to resynchronise the circadian rhythms. Finally, and most controversially, a carefully graduated plan of aerobic exercise/activity aims to slowly recondition the cardio-vascular system and promote much needed deep sleep. The difficulty is that too much activity provokes symptoms and too little prolongs the causes. Finding the level of exercise that fits im between those two limits is difficult. I keep overshooting. Currently I’m doing two brisk walks a day and two stints on an exercise bike. If that sounds a lot, bear in mind that the bike ride is for three and half minutes with no resistance and the walks are for four minutes (2 out and 2 back!) and leave me with palpitations, dizziness, and tightness in the chest.

The Liverpool research group took a group of sufferers to be assessed by a scientist who studies the physiological effects of ageing. The group (average age 38) were rated with a ‘physiological age’ in the mid-seventies. I know the feeling. I live in community with an 80-odd year old who has started to regard me as a peer!

This approach to CFS had become orthodoxy in the UK. It remains to be seen how helpful it will be in my own case. I tried a briefer version–admittedly not well handled–over the spring and summer and it left me worse off than before. So far–six weeks in–I am feeling worse than ever but making some physical progress without major relapse. So I am hopeful.

The nice thing though about the CDC’s approach is that it remains agnostic about causes and open about treatment. I do feel the strangeness of being urged to accept a theoretical approach to CFS as gospel knowing that scientifically the matter is still very much up for grabs. It concerns me that medical research funding in this country is being funnelled in one direction. I guess I harbour the suspicion that there is more to my condition than the dysregulation theory supposes. Maybe I just want a magic pill.

Entry Filed under: Thoughts

9 Comments

  • 1. crystal  |  November 9th, 2006 at 9:02 pm

    I didn’t realize how complex this was – it’s helpful to have the info. My cousin has this, and she’s viewed by many as a malingerer. I hope the new program continues to help you.

  • 2. Rob  |  November 9th, 2006 at 11:27 pm

    Crystal: Thanks.

  • 3. Steve Bogner  |  November 10th, 2006 at 2:38 pm

    Sounds like a tough time – I hope this program works out.

  • 4. Rob  |  November 10th, 2006 at 7:25 pm

    Steve: So do I. Being of a nosy, oops scientific, disposition I’ve been reading the research the treatment is based on. One of the indicators of a successful outcome is accepting the disease model. That’s hard to do when a) there are dozens of other theories out there and b) the programme doesn’t have a 100% success rate and c) I’m a skeptic. It seems to me I should fit my degree of belief to the evidence–maybe 60% then. But if their research is right that makes me less likely to have a good outcome than if I could manage 100%! And people think religious faith is odd!

  • 5. hannah  |  September 26th, 2007 at 12:55 pm

    I’m also doing the CFS treathment at the royal liverpool hospital and so far it’s helping, i’m also looking into the lightning process.

  • 6. Marty  |  January 8th, 2008 at 7:27 am

    I you guys are right, this is very detailed and it gets complicated. People react differently to different treatments. If you are looking for an all natural solution to try – my wife has had amazing results. Please feel free to visit my blog. I would love to see if we can help anyone break out of this prison.

  • 7. Anna.  |  May 30th, 2008 at 2:49 pm

    Other than the illness itself, the attitudes of others is the most soul destroying part of this. It’s like fighting a war on two fronts.
    I accidentally came across a woman on the internet, Katrina Berne, who suffers from this illness. She is a psychologist from US and she hits the nail on the head as regards many of the lifechanging aspects of this illness.

  • 8. DAVE ROBERTS  |  September 2nd, 2008 at 2:37 pm

    i wouldnt bother with the royal. anyone with authentic m.e. will not get better via exercise.

    the best website is http://www.name-us.org

    regards

    dave

  • 9. Rob  |  September 2nd, 2008 at 10:17 pm

    Dave: The site you mention doesn’t seem to say much about treatment at all.


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