M.E. or CFS?
Posted , 7 users are following.
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.
0 likes, 30 replies
jackie00198 Dono8555
Posted
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.
Dono8555 jackie00198
Posted
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.
Thanks again.
artistmike Dono8555
Posted
Dono,
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...
..
Dono8555 artistmike
Posted
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/
Dono8555 artistmike
Posted
"... 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 ...
Beverley_01 Dono8555
Posted
Hi Dono,
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
B
Dono8555 Beverley_01
Posted
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.
jackie00198 Dono8555
Posted
This is Jackie, jumping in to answer your question about rheumy. It means "rheumatologist."
Dono8555 jackie00198
Posted
Thanks Jackie. That's pretty much what I was thinkng, just thought I'd get some confirmation. ;-)
lorraine62801 Dono8555
Posted
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 .
Dono8555 lorraine62801
Posted
Hi, lorraine, hope you are feeling better today. I am certainly interested in your thoughts. I'll research that title.
Don