Tuesday, November 09, 2004

A medical blog post on M.E. says being "tired" might be a disease!

Warm thanks to Nick for pointing out the great Medical Informatics Student Blog.

Here below is a copy of one of the posts written by John Mastrangelo. It is dated November 7, 2004, and features M.E. Note my reply in comment number five.

[btw several weeks ago, Nick kindly published a post on Lyme disease, a subject that I plan to write about here - one of these days]

Being "tired" might be a disease!

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is an incapacitating illness that is estimated to affect between 400,000 and 800,000 Americans. It is a disease defined by symptoms and disability, with no known pathophysiology or confirmatory laboratory values. It seems that some physicians don't think it exists, while others are firm believers that it's a real entity. I've noticed different reactions to chronic fatigue syndrome from physicians and wanted to know what research was available on the subject.    

Obviously, this disease is troubling to physicians because of it's indistinct nature, as well as it's economic impact on the US healthcare system.  One study estimated it's impact to be 9.1 billion dollars.  Another study recognized the difficulty of the diagnosis and tried to come up with standard measures of the disease.  It was very interesting that one study delved into whether or not physicians actually believed CFS as a diagnosis.  The study went on to recognize perception as a barrier in the treatment of the disorder.

Another study found several differences in their patient population with CFS.  Increased body temperature, pulse, and evidence of deconditioning were all apparent.  In any event, with respect to CFS, I would caution the health care community to take this entity seriously and to push for further research into it's etiology.  To simply exclude CFS as a possibility because of a disbelief of its existence is not fair to one's patients or profession.

Posted By : John Mastrangelo | Link | Rotation 2 | Comments (5)

Comments: Being "tired" might be a disease!

I agree with you. Just because we don't understand something doesn't mean we should dismiss it. I wonder if depression plays a role in CFS.

Posted By Gazelle Aram / Posted At 11/7/04 9:44 PM

I did a little reading of my own on the subject, and it seems to me to be a real entity, and linked to depression. I think all psych related diseases are hard to understand because it is hard to measure anything.

Posted By Jeffrey Klauser / Posted At 11/8/04 9:21 AM

this seems to be like the debate over fibromyalgia - people either believe in it or they don't. i agree with jeff that psych-related disease are heard to understand, but with more and more treatment options to try, we should take people's complaints seriously and see what might work with them.

Posted By Rajanya Shah / Posted At 11/8/04 8:14 PM

thanks john. i liked the articles you linked. this is something i have a hard time getting my mind around.

Posted By Jonathan Cahill / Posted At 11/8/04 8:21 PM

Thank you for kindly highlighting the terrible ignorance and misunderstanding of this dreadful illness.

ME (aka CFIDS in the US) is recognised by the World Health Organisation as a neurological illness - not psychological.

Here is a link to MERGE that provides up to date information: http://www.meresearch.org.uk/melibrary/information/index.html

I have been severely affected by M.E. ever since I had a viral illness in October 1999. Here is a link to my story that I wrote in 2003: http://meandophelia.blogspot.com/2003/07/me-and-ophelia-is-personal-blog-of.html

Since that date, nothing much has changed. The changes that have taken place are that my condition has worsened but I have found ways to manage the pain and other symptoms through strict self dicipline and pacing. I've been housebound now since March 2003 and am horizontal 23.5 hours a day - without exception.

A year and a half ago, an NHS consultant from the ME Clinic here in England assessed my baseline as 15 minutes. If I live within my baseline and don't stand, walk or do any physical exercise for longer than fifteen minutes a day and avoid stress, I can manage to keep the pain and other symptoms at a more bearable level.

Going by the comments here, none of you have come across someone who is severely affected by M.E. Some are affected mildly - others moderately - it's estimated 25% are affected severely.

We are invisible. You don't see us out and about or talked about much. We have been excluded from research, treatment trials, experiments, tests, surveys etc., simply because we are too ill and too difficult to include. Over the past year or so this is slowly changing though. MS was taken seriously by the public when severely affected sufferers made themselves less invisible and came out in their wheelchairs. It will probably take another decade or two for people to take ME just as seriously.

I believe my experience proves that ME - like MS - is progressive. I've not yet come across a severely affect ME sufferer who has recovered. Those that I know have been ill for ten or more years - in some cases well over 20 years.

The comments written here are the sort of thing we are used to hearing from family, friends, colleagues and many in the medical and health care profession.

Such lack of understanding make this illness especially unbearable. There is so little compassion, people's attitudes feel cold and cruel - especially when it comes from the medical and health care profession.

The quality of life for someone like myself is the same as those suffering end stage AIDS.

All days for me are bad - some days, weeks and months are worse. A good day is a bad day. A bad day is one that is worse than the bad days.

If any of you who have commented here are a doctor and I presented myself as your patient - and told you my story, what would you say to me?

The reason why ignorance and misunderstandings are so damaging (and cruel and dangerous to us) is that treatment for psychological illnesses are the complete opposite of what's needed for ME sufferers. The activity involved in psychological treatments such as cognitive behaviour therapy and graded exercises can make the condition worse.

ME has been documented for at least 70 years. Plenty is known about it. Many doctors just don't care enough to read up on it.

Like in other walks of life, people are people - some are good at their jobs, others are not. Doctors are no different. If there are student doctors reading this, I feel 100% sure they will come across a case of ME -- and a severe case. Hopefully, by my taking time to write my story and commenting here, it will prove of benefit to future patients. I would be willing to answer any questions. Please feel free to contact me anytime. I am always here.

PS Recently I started a special blog for my posts on ME. It can be found at http://abreathofhope.blogspot.com

Another case history of a severely affected ME sufferer can be found in the first post. Please be sure to read it. It gives an accurate picture of this illness. Thank you, once again, for your kind attention.

Posted By Ingrid / Posted At 11/9/04 12:02 PM
- - -

Postscript: Before I forget, I meant to mention that the NHS Consultant from the ME Clinic assessed my baseline as 15 minutes and said after 20-30 minutes of mental activity to totally rest for five minutes at least. This I find is impossible to do. One cannot live any kind of life looking at the clock every half hour - or having an alarm go off - and having to reset it - it is too nerve racking. One may argue that it is better to try anything than be ill. I am bravely admitting here that it is impossible to carry out in reality. One would need a daytime nurse 12 hours round the clock to set a timer 24 times a day and physically tell one (like me) to switch off the laptop every half hour. I've been looking for an alarm clock for my laptop that might switch it off every 30 minutes - or show an alert of some kind, but I've not yet found it. The reason half an hour is so impractical is because it takes me so long to do one thing - a post on a good day might take me all day to write - not because my fingers are slow in typing (they are not) it's because of the slowness of concentration - takes hours to make a long piece short. On a bad day I cannot post at all.


Blogger Carrie said...

This is an excellent post. Very informative and I applaud you for reaching out to educate the medical field and readers in general.

I am sorry to learn your life is so severely restricted. I thought I was bad but you remind me there is always someone suffering worse. I sincerely wish there was something I could do but know there's nothing. You know more about this than I do. I have to read up on it some more.

Question, and this may be very stupid, does taking Vitamin B12 help at all, even temporarily? I ask because chronic fatigue is a symptom of my illness and when I was having trouble staying awake for more than 30 minutes per day, taking high doses of B12 helped. I have to keep taking it and I'm still out of it a lot but it does help. So I'm just wondering if that's an option or if it has no effect?

Keep writing when you can. You're doing a great service with this blog and I think it's important for you to have support too. I'm here when you are :-)

November 09, 2004  
Blogger Hetty said...

I too am sorry that you have it so badly. I've had it for five years but can work twice a week and I can do a lot of normal things but I just have to rest and not overdo it. But, as you say, I *do* tend to overdo it, so then I have to have a 'blah blah' day. :) I wish I would get back into the habit of taking magnesium because that did help a lot. I also wish I could've commented on that student blog too but they seem to have closed the comments. :(

November 10, 2004  

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