I'm brand new to the group. I haven't technically been diagnosed with M.E. — yet. I've been treated by the VA in Nashville for the last 3 1/2 years and had been diagnosed with cortical myoclonus, yet after three clean MRI's they have recently decided that I probably don't have myoclonus.
Since I have been left to further investigate my illness, I have stumbled across a letter from a patient whose symptoms were so identical to mine, that I could have written the article. After all his testing he was diagnosed with M.E., not CFS. I have neevr joined a support group like this, so I am trying to get a better perspective from others who may have M.E. as well. My trouble is I am not seeing a distinction between ME sufferers and CFS sufferers.
Thanks for your response Beverly, but actually, I don't think it helps much. My due diligence has led me to understand, unequivocally, that Myalgic Encephalomyelitis is NOT the same thing as 'CFS.'
The terminology is often used interchangeably, incorrectly and confusingly. However, the definitions of M.E. and 'CFS' are very different and distinct, and it is the definitions of each of these terms which is of primary importance to me. M.E. is also not at all the same thing as ‘ME/CFS,’ ‘CFS/ME, ’ 'ME-CFS,’ ‘CFIDS,’ or ‘Myalgic Encephalopathy.'
And since I have an appt on Aug. 15 with a second Neurologist, I'm trying to make sure they are of the same mind set, so, as you can imagine, I am trying to gather as much info as I can.
There is so much uncertainty around these issues that not much can be said for sure. It does seem that people can get a diagnosis of CFS or ME or some combination, depending on the doctor they happen to be diagnosed by. This can have important implications, depending upon how those classifications are used, or it can not. Are you involved in any legal proceedings where classification is likely to be important?
Yep, there's great disagreement about the whole name thing,there's an old post on here relating to just that! You could possibly check that out? Also, my last neurologist didn't even know what cfs/me meant and discharged me even though he'd ordered mri scan. I really believe that there are differences in who knows what depending on which country you live in.
There have been many discussions on this forum about ME/CFS--whether they are the same illness, etc. I think it's best not to get hung up on this issue. Generally, in the U.S., this illness is called ME/CFS and is considered to be the same disease. A very good source of information on ME/CFS is the "solve ME/CFS initiative" website. Go there, and see if the symptoms resonate with you. If they do, go to an infectious disease specialist or a rheumatologist. GP's are not typpically well informed about the illness. There's a terrific specialist in this illness in Asheville, North Caroling: Dr. Paul Cheney. If you're able, you may want to see him.
To make things even more complicated, there appears to be a drive now, especially in the US to give this condition yet another, perhaps more pertinant name of SEID, or System Exertion Intolerance Disease.
Defining whether it's ME, ME/CFS, CFS, PVFS, Fibromyalgia, SEID, etc. etc.is virtually impossible at the moment due to the fact that there's no agreed way to diagnose the condition, or it's causes and symptoms, which can be so varied. You'll get one diagnosis from one doctor and another totally different one from another.
You'll also find that sufferers argue endlessly about the nomenclature, arguing that they have one or other of the conditions, and definitely not the other...
To be honest, like the rest of us you'll find it very difficult to pin down exactly what's wrong with you and until further research finds markers that people working in the field agree on, you might as well pick a name you're happy with and go with that, it's doubtful that anyone will be able to argue with you. Believe me, we've all been through the same thing... ..
I'm in San Diego, CA visiting my dad's neurologist, but I actually live in Nashville, TN now. My neurologist in Nahsville doesn't know, but jokingly said they could find out with an autopsy. My wife, who was with me, didn't find that amussing at all!
From what I have been able to understand/learn, people with chronic fatigue may be tired because of cancer, MS, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting six months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
Alternatively, ME is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the WHO since 1969 as a distinct organic neurological disease with the code G93.3.
I did look up that code this morning and it is associated with what they call benign ME. However, just to add more confusion it costantly makes reference to CFS!
Thanks for the heads up artistmike, I am totally unaware of SEID. The politics of it all was started here in the US by a Dr. William Reeves. I stubled on to it in a fascinating article from 2011 that has some of the gory details. I'll add the link if you are interested in the entie artcile.
This is just an excerpt from that article:
Much of the anger for the CDC’s perceived failings over the years has targeted Dr. William Reeves, an epidemiologist and architect of the CFS research program from 1989 until his abrupt move last year to another division of the agency. With his gruff and sometimes dismissive manner, Dr. Reeves was never popular with the patient community, which came to view him as hostile to the search for viral or other organic causes of the illness; many non-CDC researchers echoed that complaint. When it emerged in the late 1990s that the agency had been diverting funds designated for CFS to other programs and then lying to Congress about it, Dr. Reeves—who was in charge of the program while the financial irregularities were taking place–sought and received whistle-blower protection.
Dr. Reeves also enraged the patient community by his refusal to consider changing the much-hated name of the disease—a name endorsed by the CDC in its 1988 paper and aggressively promoted in a public awareness campaign the agency launched in the mid-2000s. Patients say the name, like the term ‘yuppie flu,’ reinforces stereotypes that they are a bunch of self-entitled whiners and malingerers and that the illness itself is a form of hysteria, the latter-day version of the Victorian malady known as “neurasthenia.” That’s why many doctors, researchers and patients have long promoted a less-stigmatizing clinical name for the illness that predated the selection of chronic fatigue syndrome: “myalgic encephalomyelitis,” or ME, which means “muscle pain with inflammation of the central nervous system.”
Here's the full article: http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
To tell you the truth, I've never seen a GP for my disease, only Neurologists. I just visted the site you made mention of and while I have a number of those, I have so many more that are considered the 64 symptoms that differentiate ME from CFS including myoclonus — which is considered to be a rare symptom for ME, that is. Although I'm in San Diego to meet with my dad's neurologist, I live in Nashville, so I am fairly close to Dr. Cheney if it comes to that.
Perhaps ... I've been unemplyed for 3 1/2 years due to this illness and I have a hearing with the disability judge on Sept 16. Although my neurologist filed paperwork that I am 100 percent disabled, the fact that they can't find the source of the myoclonus has given me cause for concern.
I've had three MRI's two EEG's and they have all come back clean for Myoclonus, yet I still have all the distinguishable characteristics and symptoms.
All that tells me is thay are either looking in the wrong place, or they are looking for the wrong thing. Those are the only two possibilities. Myoclonus emanates — as far as I know — from the center to the top portion of the brain. However, ME emanates from the brain stem and frankly, I don't know if my MRI's included the brain stem. And even if they did, they probably wouldn't have known what to look for.
"... you might as well pick a name you're happy with and go with that."
I think I'll go with ME, since I know how to pronounce it. As well as avoid the stigma of anything with the word fatigue in it. There just isn't enough time in the day to try and explain it to folks. ;-)
BTW, I see your an artist as well?! Me too, photographer, Illustrator and graphic designer — or at least I used used to be. My illness prevents me from working with many of my former clients outside due to the bright sunlight. I have etreme stimulus senstivities, to include, light sound and touch. I can still work on my computer for a few hours a day, until my eyes or brain gives out. I think the work on my computer is a lot like physical exertion, however, it seems to increase all of my syptoms to what can be considered a dangerous level. Yeah ... sigh ...
I was told by a rheumy that he would be putting fibromyalgia in his report on me then, he never did but, he put CFS alone. The CFS/Me clinic says I have signs of CFS/ME. today I am in a lot of pain and totally exhausted. I know I did too much yesterday and I was herading for a fall as I've been doing too much recently ( by which I mean, very little by other peoples standards) is that Cfs? CFS/ME or Fibro ? or a mixing pot of them? who knows !! All I know is that I'm not who I was before this all began.....
At some point you'll get to the 'pacing' method for a 'cure' too ! : ) again some it works for, others it doesn't. If anything, it's certainly an interesting condition/s
Hi all . I would love to add quite a lot to this descussion , but I'm struggling at the minute. I bought. A video on amazon . It costt me £5 and it was worth it . It's called forgotten plague . I found it quite helpful . It's not helped my progress but it helped me understand a bit more .
After nearly four years, my sister finally asked me today about it. All I could do was chuckle and tell her to look it up. There's not enough time in the day to explain it.
Hope you are feeling better today.
BTW, what's a rhuemy? Sounds like a British thing.
I know what you mean. It took me a couple of days to read it, as it's quite lengthy and informative. In fact, My day job used to be photography and I recently contributed — for a nominal fee, of course ;-) — 35 photos to a book my buddy wrote on the history of the Nashville Predators (NHL) hockey team. I still haven't read beyond Chapter 3 yet. But the pics look great!
My wife and I won't call it CFS either, it's a politically and financially motivated term!
On an unrelated note, since I'm a newbie here, what's with all the buttons and points here? Are they like frequent flyer miles? Do we collect points to buy a new flat screen tv, a car, or trips. LOL, like any of us can drive or take trips.