Education for AF Sergeant with CFS

[WillowJ]

http://www.af.mil/news/story.asp?id=123239169
Sergeant Neher has been diagnosed with FM and CFS, yet plans to train for and run a marathon to prove the diseases cannot control him. Gotta love his spirit.

However, I think he's lacking good advice. Naturally, it's not coming from his doctor, who would have been given information based on Oxford studies (that's the CDC's preference).

I can't get my comment to post (the site seem to think I'm using HTML; I removed foreign characters from one of the citations, removed the gibberish [page & volume info] from my citations, removed the web address from one of them, tried removing all the citations altogether, tried taking out parenthesis, tried taking out slash marks...)

Could someone post something for him? I'm concerned his training efforts will end up like some people enrolled in GET; a permanent reduction in function.

If it helps, this was my comment:

Dear Sergeant Neher,

This is indeed an inspiring story. I wish you all the best.

I do have a concern for you. Chronic Fatigue Syndrome, Chronic Fatigue Syndrome (CFS or ME/CFS) is a heterogenous condition. However, if you have post-exertional malaise (PEM), a sick reaction (which may have a delayed onset) and delayed recovery (2 days to 2 or more weeks) from activity, you need to know something you probably didn't hear from your doctor. You can, however, verify this information from a review of peer-reviewed research; screen it for careful use of the Fukuda or Canadian criteria (Oxford criteria actually designates what we would, in the USA, call chronic fatigue, not ME/CFS).

Increased exercise will make you worse (if you have PEM). Not only will it make your symptoms worse, but it will cause oxidative stress in your cells, which can damage cellular structures and increase the risk of other conditions. Cardiac complications are known to be present in some persons with ME/CFS.

Jammes Y, Steinberg JG, et al. "Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses," J Intern Med. 2009 Aug. PMID 19457057

Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." Am J Med Sci. 2003 Aug. PMID 12920435

Light AR, et al, "Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects," J Pain, 2009 Oct. Epub 2009 Jul 31. PMID 19647494

Whistler T, Jones JF, Unger ER, Vernon SD. "Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects," BMC Physiol. 2005 Mar. PMID 15790422

Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." Am J Med Sci. 2003 Aug. PMID 12920435

Spotila J. "Post-Exertional Malaise: Perception and Reality." Review

Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Valacyclovir treatment in Epstein-Barr virus subset chronic fatigue syndrome: thirty-six months follow-up. In Vivo. 2007 Sep-Oct.

Nunez M, Fernandez-Sola J, Nunez E, Fernandez-Huerta JM, Godas-Sieso T, Gomez-Gil E. "Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up." Clin Rheumatol. 2011 Jan 15. Epub ahead of print. PMID 21234629

Jason L, Benton M, Torres-Harding S, Muldowney K. "The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS." Patient Educ Couns. 2009 Nov. PMID 19356884

Cook DB, Lange G, DeLuca J, Natelson BH. "Relationship of brain MRI abnormalities and physical functional status in chronic fatigue syndrome." Int J Neurosci. 2001 Mar. PMID 11328679

Fletcher MA, Zeng XR, Maher K, et al. "Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipeptidyl peptidase IV CD26." PLoS One. 2010 May 25. PMID 20520837

Your strong spirit and family's support will carry you well. I hope this information gives you the tools you need to manage your health and hopefully find a knowledgeable physician. Dr. Dennis Mangan (NIH) is hosting a workshop later this year, and it should be easier after that.

regards,
Willow

 

[kat0465]

not a good idea

willow,
i can sure appreciate his umph! but i don't think hes got all the info he needs.just everyday pushing will make us sicker, i honestly don't know how he can train for a marathon!

the cardiac thing is what scares me the most for him, someone needs to get him the info and fast!

 

[Snow Leopard]

He either no longer/never had CFS, or this is going to end in tears.
Lets be honest though, many of us in the past thought that we could just 'push on' with life after getting sick. The fact that we can't is only found through our frequent personal experience.

He also has this page: http://www.caboolspace.com/profile/EddieNeher

 

[Desdinova]

IMO That man never had CFS/ME. He has Fibromyalgia and Chronic Fatigue that often accompanies it. Although for me PEM was the next to last symptom to develop. That was a little over a year after I came down sick in December 2006. And many would say that I don't have CFS or ME of CFS/Me however you want to look at it since I manage to work. Even though I can do little else and send my weekends in bed. I can't help but wonder if this isn't the government trying to put out an anti PR campaign against the Push to legitimatize our viewpoints on CFS/ME in light of XMRV.

 

[CBS]

I wonder how they'll cover it if he can't complete his training or if he suffers a serious/permanent setback due to over exerting himself.

I wish him well but as a former distance cyclist (many double centuries) and back country snow pack analyst for our local avalanche association, I've paid dearly for similar efforts.

 

[5150]

i wonder who diagnosed this person with ME/CFS? certainly not doctors who work for the US Government, as our govt does not recognize this disease's existence.

 

[eric_s]

Maybe he does have CFS and will be able to do it, but i don't like the message this might be carrying (i haven't read the article and don't feel like reading it at the moment).
When i didn't have CFS for a long time, i could still do sports too, as probably many of us. Maybe not a marathon, but enough. But i doubt he can ever get better like this and it might be dangerous, as others have pointed out.
ME/CFS controls you anyway, you might not let it control what you are doing, if you are willing to push and suffer, but you don't have any control over how your body will react and how you will be feeling, in my opinion.
I admire his strength of character, if he really has CFS, but we don't need to learn how to not let CFS control us and how to endure it, we need a treatment, already. As in any other illness...
Btw, are there any number about wheter in CFS there is a higher percentage of people that have been doing sports like distance running, cycling etc. There seem to be many...

 

[WillowJ]

the thing is, we can't tell from the info in the article whether Sergeant Eddie Neher has only fibromyalgia and fatigue, or whether he also has ME/CFS. We do know doctors don't necessarily diagnose properly, and the signs and symptoms he gave aren't specific enough to tell.

if he has ME/CFS, it seems to be in the early stages and for some of us, making an attempt at sports and pushing through is possible at some points (early stages, remission)... but the payback from trying that is horrible, awful... and maybe could result in permanent damage

while it's true that there's nothing like the school of experience and hard knocks, maybe some information would shed some light on experience so the damage isn't as deep as it otherwise might be... again, if he was properly diagnosed with chronic fatigue syndrome and does have ME/CFS.

 

[beesknees]

(sigh) This makes me appreciate people like Michael J. Fox and Shaquille O' Neal. I've seen them interviewed and they will make a point to say that others with their disease are not as heathy as them or are unable to do all the things they can do. I think Sergeant Neher may be trying to be motivational but it comes off as insulting, not just to CFS suffers but anyone who is sick. I guess everyone with Diabetes, Aids, MS, Parkisons, etc. that isn't running marathons are just letting the disease win.

His wife also has Fibromyalgia but she isn't running any marathons!!