© 2011 TSM
I recently received two diametrically opposed e-mails on the same day. Both were written from the heart and came from caring, passionate people who have been dealing with ME/CFS for way too long.
The first was from a patient who has been sick for decades. Yes, decades. I can’t even imagine where or how I would be after dealing with ME/CFS that long… She related her steadfast struggle to regain her health trying every promising treatment from the reasonable to the absurd. At this point, she is managing to live a somewhat productive but restricted life with push/crash cycles and wrote to express her objection to my viewpoint that “you don’t have to live with it”. Personally, she has never met anyone who has recovered and feels that it is cruel of me to mislead patients into thinking that they can recover. I heard her frustration.
The second was from a former patient who was inspired by my book. Yes, former. Like me she had been sick for about four years and like the first patient above, also had worked steadfastly to regain her health and recover from ME/CFS. Now healthy, she was feeling the desire to “give back” to the CFS community and talk about her recovery. But she was disheartened by the number of ‘lifer’ blogs and forums on the internet where patients were insistent about the incurable nature of ME/CFS and found the negativity to be a turnoff. I heard her frustration too.
Both of these viewpoints, and all the perspectives in between, need to be expressed and heard. I’m hopeful that we can be part of that conversation and in the process contribute to some positive outcomes. What’s your take on recovery from ME/CFS? 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
The first was from a patient who has been sick for decades. Yes, decades. I can’t even imagine where or how I would be after dealing with ME/CFS that long… She related her steadfast struggle to regain her health trying every promising treatment from the reasonable to the absurd. At this point, she is managing to live a somewhat productive but restricted life with push/crash cycles and wrote to express her objection to my viewpoint that “you don’t have to live with it”. Personally, she has never met anyone who has recovered and feels that it is cruel of me to mislead patients into thinking that they can recover. I heard her frustration.
The second was from a former patient who was inspired by my book. Yes, former. Like me she had been sick for about four years and like the first patient above, also had worked steadfastly to regain her health and recover from ME/CFS. Now healthy, she was feeling the desire to “give back” to the CFS community and talk about her recovery. But she was disheartened by the number of ‘lifer’ blogs and forums on the internet where patients were insistent about the incurable nature of ME/CFS and found the negativity to be a turnoff. I heard her frustration too.
Both of these viewpoints, and all the perspectives in between, need to be expressed and heard. I’m hopeful that we can be part of that conversation and in the process contribute to some positive outcomes. What’s your take on recovery from ME/CFS? 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
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