We should probably have this straight before we go any further. What is ME/CFS? It’s a neuroimmune illness that affects pretty much all bodily systems.
The acronym ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Let’s take that bit by bit:
- Myalgic = muscle pain
- Encephalo = relating to the brain
- Myel = relating to the spinal cord
- Itis = inflammation
So, taking it all together: Brain and spinal cord inflammation with muscle pain. Now, this is an old name, dating back to 1969. Such inflammation is has been found in autopsies of sufferers, but it’s not the cause, which is not yet known.
Now, Chronic Fatigue Syndrome. CFS, simply, is a name made up by a committee at the CDC in the late 80s after a U.S. outbreak. I assure you, I am not making this up.
If you know nothing about ME/CFS, this video by Giles Meehan and friends is a good start:
Is there any treatment? No FDA-approved ones, so most patients struggle to relieve only some of their symptoms at best. Without any real treatment, acting like you have mono and staying in bed is your best chance to get well…as long as you do it right away.
The tiny amount of funding this disease receives is absolutely shocking – only a few dollars per patient per year in the U.S.
One other thing: Do not bother with the Wikipedia entry for CFS. It has historically been an edit war with loggorhhea, mostly being won by those who deny the abundance of scientific evidence accumulated over decades showing abnormalities in the illness and who instead believe CFS is, roughly, malingering. Instead of that, you should read this editorial, “All in the Mind? Why Critics are Wrong to Deny the Existence of CFS.”
Additional resources:
The sordid history of CFS and the CDC is reviewed by NYT reporter David Tuller in this article.
The webseries ME/CFS Alert’s in-depth interviews capture many people in the forefront of work on the illness.
The best book for patients is the second edition of Erica Verillo’s CFS: A Treatment Guide.
There’s a gathering of the many medical abnormalities found in ME/CFS in this document.
No Poster Girl 
Jocelyn… This blog is important writing! (And YOU are important–obviously smart & talented! And much more, I’ll learn, as I get to know you.)
Thanks for writing some of your (light-hearted) story about living with this dreadful disease.
I’m so sorry that “Dr. Cheney told (you) (you) have the dubious distinction of being among the half-dozen most affected patients he’s seen in 25 years of treating ME/CFS.” I truly admire your spunk (it comes through in your writing)!
And thank for the pics. I first saw the one of you wearing your Zeo; mebbe you’ll give me more courage re uploading my own photo online.
–Pat, fellow PWC
Thanks, Pat! Will look forward to hearing if you get the gumption going.
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Shuts down methylation, causes inflammation in neural tissues, halts production of ATP…
Is the virus or other cause attacking the body’s mitochondria? Because I can’t think of a neurochemical cycle which would shut down methylation, but I can think of a virus which wants to produce itself using methyl groups, and mitochondria have their own DNA.
This is where I’d like to be a biochemist. HERV-W, XMRV, and others… we’re answering a lot of questions right now about “Where do these mysterious illnesses come from?” which then leads to answering “How do we resolve them?”
And I just answered my own question. My apologies for being ignorant. But I think it’s important to tell folks, because this is why plants don’t have muscles. (As I’ve learned, the cytoplasm — the fluid — inside a cell can produce a little ATP on its own, but it takes a mitochondrion to produce lots of ATP so the cell can do more than bask in the sun. And even that requires a chloroplast.)
No problem, Zach. You couldn’t possibly have been expected to already know that, but it was an excellent, excellent question.
Coupl’a things about Hillary’s version of events.
The mysteriously sudden shut-down of Kaplan and Holmes investigative interest occurred before the insurance companies had a hint there was going to be something big coming along.
We were all convinced that local members of the chamber of commerce, who were mucky-mucks in the ski resort industry, must have complained their political friends that bad publicity was wrecking the local businesses, and to tell the CDC that in the interest of protecting the tourist economy at Lake Tahoe, that this “mystery malady” needed to have a lid put on it…. pronto!
You could just about put a date on this change of attitude.
From what I heard, Kaplan and Holmes had been going through the motions of an investigation, but suddenly every action and expression seemed to shift from mild disinterest to total obstructionism and denial.
Yes, the insurance companies did throw up a wall of disclaimers and denials, but that was long enough AFTER Kaplan and Holmes amazing epiphany that absolutely nothing strange was happening at north Lake Tahoe, that I don’t think they instigated the strange loss-of-interest.
And not that Dr Jones deserves any credit for being right, but he did have a point about Myalgic Encephalomyelitis having a specific connotation and so it should not be used.
We were still reeling with the discovery of a new virus, “Human B Cell Lymphotropic Virus”… what you guys now call “HHV6A”. This new virus of HBLV was still highly suspect, and to simply apply ME to a similar illness which looked like it might have been caused by HBLV could make it appear that causality for ME was being implied.
Having a newly identified virus as a possible culprit was a bit too specific to draw that kind of connection to ME.
By this time, the community was so ballistic over the illness that we almost welcomed a trivializing term. A medically impressive one would have been an affirmation that the disease was truly serious, and would have scared the snot out of everyone,
making a bad situation much worse.
It almost seemed that the CDC had done us a favor by choosing “CFS”, just to take the heat off for a while.
What should the name matter to a scientist?
It is the ENTITY and the evidence which is important in the medical world.
Not that we liked the name, but never dreamed anyone would seize one word as being the sole symptom, and forget the terrifying illness it represented.
That’s not how science is supposed to work, so doctors would never do that….
or so we had believed.
That’s how I remember it, anyway.
Ask Dr Cheney if this sounds like the way he recalls these events.
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Perhaps I have missed it on your blog as I have just started reading last night, but do you talk about any of your underlying diagnoses on here? Do you have any? I have seen a lot of info on the XMRV, which, of late, is very controversial, but I was thinking about going to see Dr. Cheny myself and I was wondering if he does testing/treatment for viruses, mycoplasma, mold, Lyme, Candida, heavy metals, etc.? These have all been linked to underlying causes of CFS. I personally have everything I just mentioned and have developed an autoimmune disease to boot. Thank you for taking the time to write this blog! So glad to hear you are starting to feel a little better!
Hope, it depends a lot on what you’ve already been tested for. He doesn’t tend to repeat things you’ve already done unless you want to re-do them. I had a fair number of those tests before becoming his patient and as far as we know I have “just” CFS. The only thing on that list I’ve been tested for since becoming his patient is XMRV, and I was one of the few in the practice who came back negative.
not boring.
Thanks. 🙂 It’s all in the eye of the beholder, isn’t it?
Thank you for enlightening me with regards to this illness. You are very inspiring, and i pray you have some relief from pain. I will be reading and familiarizing myself with some of your older posts.
Thank you for spending some of your time visiting, BWS. I appreciate it.
Thanks for telling me about the illness. i just started reading this today ! And i wish u all happiness in the world . May GOD bless you.
Jocelyn, have you been tested for Lyme through IGeneX Labs? Standard labs are only 50% sensitive and therefore 50% accurate … IGeneX is the gold standard for Lyme testing. Sure sounds a lot like Lyme, so it might be worth looking into if you haven’t been tested through them already.
Is that 50% of positives are false, 50% of negatives are false, or 50% of all results are false? Only one of these can be true. A test with a 50% false-positive rate can be tried again if positive, reducing the chance of false positive to 25% (more commonly a more accurate test will be used, reducing that error rate much further); the same with false-negatives. If half of all results were false, however, the test probably wouldn’t be used.
50% sensitive, meaning that standard tests (offered through LabCorp and Quest) will only detect the Lyme bacteria (Borrelia burgdorferi or Bb) 1/2 of the time – therefore, they are producing false negatives. These standard tests include a two-step process – an ELISA test, which if positive, will justify a confirmatory Western Blot test. The ELISA test is like casting a wide net for possible Lyme antigens, meaning it may detect antigens if you have them, but it is not as good at ruling out non-Bb antigens. Conversely, the Western Blot looks more specifically at Bb antigens, but in order to do so the sensitivity is compromised (and the CDC Western Blot does not even test for some important “bands” of the Lyme bacteria that Lyme-Literate doctors use in diagnosis). Therefore the Western Blot may still fail to detect the Bb antigens. The good news about standard testing is that it is very accurate IF you receive a positive result.
These standard tests were developed for surveillance only, not diagnostics, and the CDC simply multiplies the number of reported cases to come up with the total estimated cases. In fact, the CDC acknowledges that the number of people who suffer from Chronic Lyme Disease is at least 10 times the number that is reported, partly because of poor testing, but also because of misinformed doctors, mis-diagnosis, and controversy surrounding the disease.
There is a great documentary called Under Our Skin, which I highly recommend in order to gain a better understanding of Lyme and the problems with misdiagnosis. It was on the short list for an Academy Award in 2009.
If you are interested in pursuing Lyme as a possible cause of ME/CFS you MUST seek out a Lyme-Literate doctor. This is of utmost importance, as most doctors are not trained in recognizing, diagnosing and treating Lyme disease, and in fact many will not even talk to patients about it. Again, I urge you to watch the documentary for a better understanding of this.
If I hear ‘aren’t you just like, tired all the time?’ ONE MORE TIME! I will go quite mental.
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Hi Jocelyn, thank you for writing this blog. It is so helpful to read the stories of other ME patients. Please visit this website: http://www.hfme.org . It is the best and most informative website on ME I’ve ever seen and has helped me tremendously. We must stop to use the wastebasket diagnosis CFS. It is always a misdiagnosis of patients with many different illnesses that happen to have fatigue as one of many symptoms, and patients deserve to get their real diagnosis. Genuine Myalgic Encephalomyelitis on the other hand has always been an acute-onset infectious illness related to Poliomyelitis which occurred in epidemics long before the term CFS was created, and has very distinct symptoms. Doctors like Betty Dowsett and Melvin Ramsay knew what they were talking about (check Ramsay’s criteria). We MUST stop to talk about dozens of fatiguing illnesses as if they were one and the same, we MUST start to enable people to get their right diagnosis, and we MUST accept ME as the distinct neurological infectious disease it once was and not use its name for all kinds of illnesses.
https://www.youtube.com/user/AHummingbirdsGuide/videos
Wishing you all the best for your future health!
Anna
Hi Anna! I’m very familiar with HFME. Jodi’s work was pretty much the only good source of info online when I fell ill 10 years ago. I consider that I have ME, and I use that name first when I deal with the healthcare system, but I use the combined name some of the time because I believe we’re in a transition process right now and will eventually get to the point that ME is used commonly and correctly.
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