CFS Blogger Has Column on the Huffington Post

[Cort]

CFS Blogger Shows Up on the Biggest Blog Platform of All: the Huffington Post

John Falk is a journalist and former war correspondent who came down with ME/CFS a couple of years ago during an overseas trip. He's been out of commission for a couple of years and has now shown up at the Huffington Post writing openly about CFS. (A CFS blogger on the Huffington Post? - Another sign that the CFS is 'making it' as a mainstream media item).

http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html

He's very descriptive - check out this

For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.

He notes how ME/CFS is categorized by a sloppy medical profession

That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.

He's very honest as well. Psychotherapy or CBT's connection to CFS is the story of the day right now and he confronts that aspect straight on.

And therein is the rub. I have no problem with CBT as part of overall treatment for CFS. I'm still fighting to get better and am not yet ready to surrender to a life where I spend 20 hours a day horizontal, lack the physical energy to sleep with my wife, and hold my new baby girl for more than a minute.

And he's tried. He's tried hard and because that I think he is a superb bridge for us to the public and the medical world. This is not someone who rejected whatever opportunities therapy presented - he's given it a go...and it hasn't worked out.

I've seen four therapists to find an outlet for my frustrations. Instead, I have found each time a good-natured, well-intended professional who -- when I tell them my textbook symptoms of CFS -- only shake their heads and say, I never heard of that. It must be awful.

Instead the best therapy he's gotten is to get in touch with people who understand where he's at.

In the end the only help I've ever received from a therapist, or non-CFS specialist doctor for that matter, was to seek one who has a loved one who suffers from CFS. It seems in this era only they know the devastating truth and take you at your word that you're sick, not sick in the head, which for me is the best therapy I know of right now.

Check out his blog and lets get him some traffic on the Huffington Post. This is the first post on the Huffington Posts Health section...the only its and its future blog posts are going to stay there is if we flood those posts with comments.

http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html

Signing into Huff Post is a little confusing. I did it using my Facebook site and then had to input my email address on the right as well. You can also use the Share button on the top of the article to share the article with your Facebook site, blog, twitter, etc.

 

[glenp]

I did a quick reply

 

[WillowJ]

kudos to John Falk for sharing his story. He did a good job! The commenters added some important content. Thanks for finding this and sharing the link, Cort.

 

[illsince1977]

I think he missed the essnce of what CBT as I understood it is - convincing PWCs they are not ill, but are instead making a big deal out of nothing - is that correct?, which someone pointed out in a comment. Other than that it was good to see someone "coming out of the closet" with CFS. It's a very apt parallel.

 

[In Vitro Infidelium]

I think he missed the essnce of what CBT as I understood it is - convincing PWCs they are not ill, but are instead making a big deal out of nothing - is that correct?, which someone pointed out in a comment. Other than that it was good to see someone "coming out of the closet" with CFS. It's a very apt parallel.

CBT is just a systematised approach within a 'therapy' context, to encourage better/more/alternative activity/behaviour within the patients overall lifestyle. How it is applied and the objectives that are set, is down to the therapist/institution. CBT is really little more than the formalisation of good practice delivered informally by Physiotherapists around the world. A key part of all the published CBT studies is that the therapy is based on a negotiated process between therapist and patient, clearly where this breaks down and the patient is (or at least feels) disempowered, and in the case of M.E, forced to do more than is healthy, the results will be harmful.

We shouldn't pretend that deconditioning is not an issue, even if Wessley, White and others have grossly overstated the role of deconditioning. Some M.E/CFS sufferers will benefit from CBT and GET if those therapies are delivered by informed therapists who are sensitive to the requirements of people with M.E/CFS. Making simple treatments like CBT and GET no go areas behind barricades that have to be defended with energy and propaganda, is a drain on our limited resources - establishing good practice and relevant prescribing rules (CBT and/or GET is not for everyone) is the pragmatic way forward.

There is never going to be a magic bullet for everyone with M.E, even using the Canadian Criteria the patient population will include multiple disease causations, and the development of treatments, even those with limited application and only small lifestyle gains needs to go hand in hand with research into causation. Going to war with one section or another of the medical profession may 'feel good' but it is not 'smart'.

IVI