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ME/CFS Gets New Name – Official Recognition

2/10/2015

8 Comments

 
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From time to time, ME/CFS has been discussed in the mainstream media.  Usually there’s a flurry of reporting, an interview or two, maybe even a national nightly news segment and then a lot of silence.  We could be in for a repeat of the past but maybe not this time.

The Institute of Medicine – at the request of an impressive number of Federal agencies including the Department of Health and Human Services, NIH, the Agency for Healthcare Research and Quality, the CDC, the FDA and the Social Security Administration -  has convened an expert committee to examine the evidence base for ME/CFS.  Their conclusion?  ME/CFS is a real physical disease.  Should we applaud or just do an en masse exaggerated eye roll?

To their credit, they have determined that physicians should be taking ME/CFS seriously and that a new designated diagnosis is required to separate ME/CFS from its former reputation as an imaginary or psychological illness.  The new name is Systemic Exertion Intolerance Disease (SEID).  OK it doesn’t exactly roll off your tongue but it is a disease not a syndrome.  Score one for us.


Here is a link to the official report   http://www.iom.edu/Reports/2015/ME-CFS.aspx

Here is a link to a report on NBC’s website   http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902

So what does this mean for those who are suffering with SEID?  Maybe this could be the beginning of serious dollars being dedicated for research.  Maybe some treatment protocols will be developed that have some basis in actual case histories.  And just maybe patients who are suffering with SEID will be greeted by physicians with understanding and a commitment to get them well again without referring them to a psychiatrist.  Please COMMENT or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

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

Be Well Again,


Martha


8 Comments
Donna
2/10/2015 09:10:28 pm

Just before receiving your e-mail about the new blog, Martha, I was reading the flurry of comments on Facebook after my friend, Jen Brea had posted the report. Many of the comments were from very knowledgeable, pro-active advocates for ME/CFS awareness. Most of the feedback was quite negative citing the report as incomplete and lacking as a diagnostic tool. The criticism centered around the protocol to conclude a diagnosis, mainly the length of time. Many felt that the list of symptoms was lacking some key indicators that most of us share. However, I see it as progress, particularly if the recommendation for dissemination is used. It is my understanding that many health care providers have little knowledge of ME/CFS even to the point of its absence of coverage in medical schools. Hopefully, the report will lead to more research interest and dollars as the public becomes aware of how widespread and debilitating ME/CFS/SEID truly is.

Reply
Martha
2/11/2015 01:09:53 am

I completely agree. I want SEID patients to be accepted and helped by knowledgeable physicians. This is a good beginning toward that goal. And maybe money will follow this as well. For now, we have to decide what acronym to use :) I'm leaning toward SEID/ME/CFS. By putting SEID first, we may eventually get to drop the rest when it's been around for a while. Thanks Donna!

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Andrea link
2/11/2015 01:34:53 pm

Finally, we get the word disease in there. A 'syndrome' certainly doesn't sound serious and I personally believe that word is more open to the opinion that it's 'all in our heads'. However, I'm not looking forward to telling people I have SEID. Something like ME or Lupus, people seem to take as serious and most have heard of it. I think it will take a very long time for the name SEID to take hold and personally wish we could just have a one word/two word name that somehow startles people to the seriousness of the illness.

Reply
martha
2/11/2015 02:39:15 pm

I agree that SEID is awkward. If it catches on we'll be tripping over it for a while. What would we name it? Thanks Andrea

Reply
Tim Boland
2/14/2015 12:38:36 pm

Just after reading your post this week, Martha, I read an article about the renaming of CFS. Many people either had this illness or had empathy for those who do. But I felt some of the outrage which you have expressed in your book about doctors who do not understand CFS/SEID, when two commenters made snide comments like ‘doesn’t everybody have this’, meaning chronic fatigue. Let’s just say on the Times there was a well spoken backlash against those making such ignorant and dismissive comments.

My doctor has always accepted the CFS/fibro connection, but as I have shared, he is a doctor who comes into the room ready to do lots of talking and little listening, I’ll just put it this way, it would be quite possible in describing him to use the words ‘arrogant’ and ‘ass’ in the same sentence!

I will likely continue with using the term CFS for now. I certainly know what it is that I have and how I feel. I hope that in future discussions with this illness now being called a disease, that there will also be the inclusion of text in research articles which indicates that some people do recover, in fact on of the commenters on the SEID article said just that, that it took a few years but slowly he recovered. My doctor also related a story to me of one of his patients, unnamed of course, who over several years had a full recovery, and I must credit the doctor with having enough humility to admit ‘it was nothing that we did’.

A final thought, I read too that with hospital patients in recovery with a whole array of illnesses or accidents, that those who were in a more pleasant room with a view through a window looking outside, often looking toward trees or some other natural scene, had significantly less time in recovery and a better prognosis than those who did not. There is a lot to be said for having, as much as we can, a hopeful attitude about our illnesses, as some healing often follows.

Reply
Martha
2/14/2015 03:10:12 pm

Thanks Tim!

Reply
Andrea link
2/16/2015 03:04:37 pm

I found Tim's comment up above very helpful and encouraging. A very valid point that patients with any illness recover better a hopeful attitude and positive surroundings. Another thought on the name of SEID....I feel it is unfortunate to have the word 'exertion' in there. To me, it feels like it is subject to the harsh criticisms the word 'fatigue' seems to invite. All the comments such as "oh so you just feel a bit tired then" I fear may be replaced with "oh so you feel well as long as you don't go running or as long as you rest all the time". I can just imagine that we will still be subjected to having to try and explain/justify ourselves.

Reply
Martha
2/16/2015 04:04:24 pm

I agree that hope is important but it needs to be paired with a plan. Neither works without the other. And yeah the only word I really like in SEID is Disease. We'll have to see if much changes but I'm hopeful :)
Thanks Andrea!

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    Hello,  I'm
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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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