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Recovery Opinions – Some More Hopeful Than Others

9/20/2011

3 Comments

 
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© 2011 TSM
Last weeks blog triggered e-mails from patients who were firmly in either the ‘can’ or ‘can’t’ recover camps.  As one might guess, most of the opinions seemed to be related to whether or not each had been able to recover.  Laura Hillenbrand was mentioned frequently by the ‘can’t’ camp.  Here’s a link to her article about her illness.  http://www.cfids-cab.org/MESA/Hillenbrand.html   Leigh Hatcher was a favorite of the ‘can’ camp.  Here’s a link to his website.  http://www.notcrazy.net/

And then there was the rest, fence sitters who were hopeful and wanted recovery to be possible. 

For me, I keep coming back to what I feel is so unfair about this ME/CFS diagnosis.  The fact the even though thousands of patients get this label, they actually don’t all have the same disease.  So using the same protocol and approach, two patients can have completely different outcomes.  Or one has great success and the other minimal improvement.  Yes, I believe that ME/CFS patients can recover.  Can they all recover using the same treatment?  No.  Can they recover using the same strategies?  Call me crazy but my answer is yes.

My training as a health professional drilled into me two things:  first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body.  Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.

My next blog will focus on personal data collection (yes, I keep harping on this) and successful strategies.  Have you developed any strategies that work for you?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

3 Comments
Janelle link
11/29/2011 02:19:42 pm

Hi Martha,

You're correct that the complicating issue here is that not all people with an ME or CFS label have the same disease. Research shows that the more restrictive the disease criteria, the more unlikely the recovery--less than 10% recovery is observed among those who fit a more restrictive case definition (Joyce et al., 1997).

The actual disease (or disease spectrum) of ME is a neurological and immune disease, similar to having Multiple Sclerosis, Myasthenia Gravis, Lupus, or something of that nature. It isn't something most people recover from, or not with our current knowledge base. I do believe it's possible for us to learn more and be able to find cures for all these diseases. But we don't know how to do that currently.

And that includes people who fit the more restrictive definitions of ME/CFS (especially the Canadian Consensus Critieria for ME/CFS, and the International Consensus Criteria for ME or atypical ME).

This doesn't mean people who fit into these classifications shouldn't hope for a cure! It does mean they shouldn't feel they are doing something wrong, or shouldn't feel they are not doing all they can, when/if they don't get better.

One can find the CCC at http://www.co-cure.org/ccpccd.pdf and the ICC at http://www.meassociation.org.uk/?p=7173

An overview of pathology is found in those documents and in Jason et al.'s eitiological model here: http://www.ncbi.nlm.nih.gov/pubmed/21892413 (free full text avail on pubmedcentral).

bye,
Janelle

Reply
PS From Janelle
11/30/2011 01:13:04 am

P.S. I don't mean to use recovery as an exclusion criteria for having "real" ME/CFS. As I noted, by some studies, a few people with strictly-defined ME or ME/CFS do seem to recover. And it's not impossible for people with diseases like Multiple Sclerosis to recover, just uncommon. I also don't mean to say that these are the only viable ways to define ME/CFS. We really don't know that, because there aren't enough studies on biomarkers, and the studies we do have, aren't big enough.
My point is merely that people who have ME or CFS and don't recover, shouldn't feel pressured that they are doing something wrong or missing some technique or treatment. It may not be possible--yet.
bye,
Janelle

Reply
Martha
11/30/2011 01:19:58 am

I agree Janelle. Thanks for the links. It seems that no matter how ME/CFS patients work to get healthy, there's always a gray cloud of blame over them. Somehow they're just not doing the right things, not following through or just not capable enough. We have got to change this perception. ME/CFS sufferers just don't deserve it!

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    Hello,  I'm
    Martha Kilcoyne

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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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