Discussion in 'Fibromyalgia Main Forum' started by LindaJones, Oct 15, 2010.
Hope it works out for us.
Also noted that their recommendations in previous years the HHS has not done. Like
Hopefully this is the year!
Thank you for sharing, Linda.
My two cents: There is no need to turn CFS into something it isn't.
The CDC is never going to turn "CFS" into "ME-CFS" when they know M.E. and CFS are different illnesses. They state this on their website.
Why on earth would we want to take a condition that doesn't need any immune system, neurological, or cardiac involvement to get a diagnosis, that centers around fatigue (CFS), and rename it to an illness that has immune system, neurological, and cardiac involvement as its main features, that centers around muscle weakness (ME)???
That makes as much sense as renaming chronic headaches to brain aneurysms.
I'm glad the United States still seperates them. Probably because, since the CDC is the reason for the name change in the first place, of course they understand the differences. People have written to the CDC about this, and gotten letters back from them explaining why they are different!
What we REALLY need is better diagnostic criteria, not a name change with the same diagnostic criteria, which will get us no where.
A lot of people diagnosed with CFS have M.E., and they deserve to have their own category.
A lot of people with CFS have something else entirely, and THEY deserve their own category.
This is the only way we shall ever get treatments: We cannot loop everyone together.
At the very least, I hope we can at LEAST create a new category for those who have XMRV/HGRV, so those individual can get the right treatment.
You seem to have strong ideas on this, I dont know about the name change but I am intrigued by what you wrote. I have been trying to understand how immune system ties into m.e. or cfs,I have xmrv+ and some neurological symptoms like spinal pain and headaches, some immune markers like low natural killer cell and high rnase and elastase, and some cardiac stuff-Cheney thought I had diastolic prob w/likely p.f.o., also had positive tilt table and orthostatic intolerance------so what do you think that means I am......do I have an immune problem primarily or a neurological one or a heart one or do they all tie in caused by a retrovirus?
yes i do have strong feelings about this, I'm sure it showed, LOL!
If someone tried to put a bunch of misdiagnosed people under the diagnosis of Parkinson's, or Multiple Sclerosis, or AIDS, even though those people didn't have that condition, people would be in an uproar. And such is the reason I disagree with this name change.
There are many things that lead to a CFS-like illness. All of us are sick, but that's about all we have in common. A myriad of symptoms without any known cause, just because we haven't seen the right doctor to get a diagnosis.
A collection of people without a diagnosis, does NOT create a disease, no matter how many people you put into that group!!!
CFS should really be renamed to "Unidentified Medical Condition," if anything.
I'd suggest you go to
and read Dr. Hyde's explanation of Myalgic Encephalomyelitis, to help determine whether or not you could have it. I'm a shockingly classic case of M.E., all the way down to the time of year it usually strikes! You do share several characteristics of it, way more than is needed for a CFS diagnosis. Actually, the CDC specifically asks healthcare professionals (on their website) that NONE of the tests you had should be performed because they "do not aid in diagnosis." Wrap your head around that one.
No one knows yet what role XMRV/HGRV plays in these illnesses. That's too loaded a question, but we do know it was detected in very sick patients diagnosed with CFS, and in my opinion, you and everyone else with that particular set of symptoms needs to be placed in your own category until we know more.
If XMRV has the potential to kill you, wouldn't you want your own research group, instead of being put in a group where people had similar symptoms but had NEVER experienced your type of illness? You'd be outraged if it that didn't happen, while your life was on the line!
I think I get ya girl
ok, but what about this
first of all, I would prefer to be thought of as M.E. if I had to pick, cus yea, CDC has been working on chaning "CFS" which in the 80s was what they called the incline village cheney peterson epidemic which we probly agree was ME, but they called it CFS so in a way ME and CFS could be the same people some of the time
but yea, then the CDC got busy trying to water down "cfs" which was really 'ME" and they started studying depressed people they called on the phone asking them if they were tired etc and they started creating a studied population of "tired" folks etc and people who had real ME neurological or immune problems, well they werent and still arent allowed to be in CDC studies so its a mess.......so NO I do not want to be in that group of cfs who are just the tired people the cdc went out and found to try to obfuscate away from the real ME CFS folks with neuro endocrine immune probs.
but what to do cus they are all mixed together now around the country.
we all know some people with dx CFS really have ME. thats what it is supposed to be if you go see Cheney or Lapp they will dx you with CFS if they think you have ME.
Yes, CFS was based off of one of the M.E. outbreaks, but the CDC didn't think it was ME. They thought it was mass hysteria, and that is when they invented the term "Chronic Fatigue Syndrome." There are numerous assumptions about why they thought/did this, and all of us can see what has now happened as the result, but the ultimate conclusion is that, it's too late for them to backpeddle. They have never, ever said CFS is ME. Now they can only perpetuate the illness category they invented, or risk being "exposed" for not stopping this epidemic when they had the chance.
I do wish it was true, when you said, "we all know some people with dx CFS really have ME" but the fact of it is, barely anyone knows that. Most people have no idea that the USA is the only major country that still keeps them distinct. Most people also have no idea that CFS was invented because our goverment thought there were sporadic "epidemics" of psychological illness/hysteria!
"What to do" is create better diagnostic criteria, so people with specific conditions can get research done on what is happening in THEIR bodies, not someone else's next to them who only has one thing in common.
We've seen what happens when people try to combine CFS and M.E., and apply research done on general CFS patients to people with ME. Most obvioulsy, people are forced to participate in exertion that leads to ILLNESS PROGRESSION, not resolution, just because some "studies" showed that people with CFS improved with exercise!
How can people want to call CFS the same as M.E., just to "make it sound more serious"? Again, let me try to say "I want my chronic cough to sound more serious, so I'm going to call it lung cancer instead," and see what happens! Fatigue doesn't kill you, but M.E. does. This XMRV virus could, too. And anyone with a diagnosis of CFS is only missing what's really causing their illness, so who knows where they will end up.
Again, a collection of people without a diagnosis, does NOT create a disease, no matter how many people you put into that group, and we will NOT advance in any research if we further muddle the lines, especially now that people are finally starting to see there are differences.
(edited because i started to ramble... think i still ended up rambling though!)[This Message was Edited on 10/16/2010]
Karyn, but you don't believe for one minute there is a possibility the govmt really thought it was mass hysteria? that is so laughable, I have a masters degree in psychology and I can tell you the odds of that are really there are no odds that is what happened, its ridiculous and I would bet a million dollars the CDC knew that too, puhlease. But yea since they started the lie they don't know how to get out of it I suppose although I doubt that many people know about it that they would care. I mean a politician can say one thing this month and next month pretend like they never said it even though it lives on on the internet so I doubt the govmt is too worried about the past. Its most likely about money, saving money, especially with the whole world going broke because the level of corruption and ponzi schemes got way out of hand in new millenium.
when i went to Cheney he called it CFS in 2008 and he meant an illness related to what happened in Tahoe in 80s he knows it when he sees it. I think the biomarkers are there, the low natural killer cells etc Dr Klimas' research refers to it and she just talked about them again this week at CFSAC. If certain patients share things like :
immune abnormalities (natural kiler cells, cytokine issues etc)
Post exertional malaise
blood pressure dysregulation
low body temp
If you see like 10 out of 20 or 5 out of 10 biomarkers like that in people all over the country, well its like MS or RA or many illnesses, its not always easy to boil it down to one test to say if ya have it, but you can be pretty certain if there is a pattern of always seeing some of the same problems in people from dif areas well its probably the same thing. Cheney was sure there is a virus at the bottom of this when I saw him in 2008 but at that time he had given up on trying to isolate it.
Sure some people have neuro problems from metal poisoning some have brain problems from head injury etc and they might share some symptoms but not all also have a virus, however, I think what xmrv is showing is that some people that have different traumas that push them over some edge also have in common a retrovirus that makes them cross a line of a DNA change to where they cannot get back to near baseline.Researchers did find in the mlv xmrv research that there are different types or levels of the virus and that is why some people can't get out of bed with it and others can work with restrictions. It also could manifest as something completely different than a form of "cfs" or "me" but as autism or cancer etc perhaps schizophrenia. I have been reading all the research all the politics and I am convinced WPI and Alter et al have hit the motherload of viruses that if the govmt doesnt continue to obfuscate things could be the key to preventing a LOT of illness if caught early enough and treated, I am sure of that, but I am not sure that certain factions of the NIH DHHS arent going to keep trying to slow the research down and give money to people doing bogus research instead of to the experts at WPI, Harvey Alter deferred to WPI saying they knew more about it than him and that they were right on and that steps should be taken to protect blood supply. However when the higher ups found out they seem to have quieted him down a bit, I hope he is just busy working on it, not going silent out of orders. The guy discovered Hep C and he has been around for some time, hopefully he can stand his ground. Time will tell.
[This Message was Edited on 10/16/2010]
Psychology is my field as well and honestly, no, I do not believe it. There are many things I believe as far as why that happened... But for the sake of not "starting something" on this board, I am only stating what was publically announced. And mass hysteria is the reason they "claimed," even if I beg to differ.
Ultimate point is that we need to give everyone their own category, not gather everyone under an umbrella.
hey seems we agree in some ways and not others
its all good
I dont feel I have it all figured out, but it really has been hitting me the common biomarkers some folks have with "cfs", Mary Schweitzer had good written testimony about it at CFSAC, really worth a read, the woman is so articulate and sharp, ampligen has helped her a lot too
I am trying to recall, so what do you think you have? you don't think you yourself have primarily a mental illness though do you? or are "tired" the goofy thing the CDC studies.
but hey no offense to depressed or tired people but they should go on mental illness boards or nutrition forums or something.
on a little different vein this blog relating to cfs and internet made me take pause:
Yes, it'd really be nice if we could put all the people with common biomarkers into various categories and do research on them, instead of making people qualify only for "fatigue," throw them into a box, and then expect to find consistent abnormalities.
It's no wonder major organizations haven't found out how to help us. They're studying multiple groups of illnesses, and trying to call them all "CFS" when the people involved actually have very little to do with one another.
Only 30% of people were helped by Ampligen in the trials, which made the FDA say, "there isn't enough proof; 30% isn't enough."
What would have happened if we had furthered segregated people with "CFS" and gave people with similar symptoms--symptoms completely different than other people--a seperate name, instead of trying to make them fit into someone else's box? Then only the people who actually had the potential to be helped would have been in that study, only the people who had that particular illness would have been in that study, and the percentage that showed improvement would have been FAR greater than 30%.
Ampligen would have been approved.
Now, 30% of people with a form of "CFS" that responds to Ampligen cannot get treatment, because 70% of the people in the research studies did not even have their same illness, so of course they wouldn't respond to it.
We will not get ANYWHERE putting people in one big category.
Thank God for institutions like the WPI that are doing their studies on specific groups, like real scientists do.
We are all sick with something and we all deserve a real treatment, if not a cure.
yes, I agree to agree with your last post karyn, well said
Separate names with a comma.