CDC's response back 14/8/2010 to my questions

[taniaaust1]

My email was as follows

Sent: 8/11/2010 07:14:49 AM
To: cdcinfo@cdc.gov
Subject: Needing some info

Hi, my doctor often refers to your site and Im confused about something. Your website says the following "ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

Please can you tell me what are the neurologic and muscular signs which distinguish CFS from ME? or can you direct me to where to find this percise info which tells of exactly what these neurologic and muscular signs are? Thank you

CDCs reply back is

Thank you for your inquiry to CDC-INFO. In response to your request for information on the neurologic and muscular signs which distinguish chronic fatigue syndrome (CFS) from myalgic encephalomyelitis (ME), we are please to provide you with the following information.

CDC-INFO cannot answer medical questions or provide consultation. These questions are best answered by a doctor who is most familiar with the patient's condition. While we cannot provide you with personal medical advice we hope this information and resources are helpful.

The CDC website provides basic facts about chronic fatigue syndrome (CFS) and ways to treat it. There are materials on the website for patients and doctors as well as scientific publications. We also provide links to other Federal websites for CFS.

While CDC does not cover the topic of myalgic encephalomyelitis, we recommend that you review abstracts of reports and other publications by using the resources of the National Library of Medicine's PubMed service.

PubMed is a searchable database that provides abstracts of biomedical articles and reports. You may also be able to obtain full text articles (some services may require subscriptions to view full text articles). If you are seeking less technical information, please use the National Library of Medicine's MedlinePlus, which offers a wide range of information on diseases, disorders, treatments, drugs and preventive services

PubMedA service of the National Library of Medicine and the National Institutes of Healthhttp://www.ncbi.nlm.nih.gov/sites/entrez/

Medline PlusA service of the National Library of Medicine and the National Institutes of Healthhttp://medlineplus.gov/

You may find more information by going to the following websites:

Chronic Fatigue Syndrome National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases http://www.cdc.gov/cfs/

Understanding Chronic Fatigue Syndrome: A Guide for Patients National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases http://www.cdc.gov/cfs/pdf/UnderstandingCFS.pdf

Recognition and Management of Chronic Fatigue Syndrome: A Resource Guide for Health Care Professionals National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases http://www.cdc.gov/cfs/pdf/HCPManaging.pdf

CFIDS Association of America 704-365-2343 http://www.cfids.org/

Chronic Fatigue Syndrome Advisory Committee (CFSAC) United States Department of Health and Human Services http://www.hhs.gov/advcomcfs/

National Women's Health Information Center United States Department of Health and Human Services http://www.womenshealth.gov/faq/chronic-fatigue-syndrome.cfm

Health Finder United States Department of Health and Human Services http://www.healthfinder.gov/scripts/SearchContext.asp?topic=171

Trans-NIH Working Group for Research United States National Institutes of Health http://orwh.od.nih.gov/cfs.html

XMRV Association with CFS United States Department of Health and Human Services http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html

Any links that may be provided to non-Federal organizations are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization web pages found at these links.

Thank you for contacting CDC-INFO. Please do not hesitate to call 1-800-CDC-INFO, e-mail cdcinfo@cdc.gov, or visit www.cdc.gov if you have any additional questions.

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). .

This service is provided by Vangent, Inc. under contract to CDC and ATSDR.
SH / LWSP 5820

[THREAD ID:1-1TO6Q7] [SR No.:1-110315941]

feel free to repost my mail elsewhere with the source .

 

[Leitwolf]

LOL..

I would say that gets it straight ;-)

 

[V99]

Genius. So lets get this right.

Blah blah blah

Then:

While CDC does not cover the topic of myalgic encephalomyelitis, we recommend that you review abstracts of reports and other publications by using the resources of the National Library of Medicine's PubMed service.

What do they then direct you to:

You may find more information by going to the following websites:
Chronic Fatigue Syndrome National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases http://www.cdc.gov/cfs/

What are they saying.

ME = CFS. but ME has neurological signs and symptoms, and CFS does not????????

 

[Mark]

(gasping)

I think if I've got this right: ME is exclusionary for CFS, we therefore don't deal with ME here, not sure exactly who does, don't have any information as such, but for more information about ME, see CFS.

Something here is reminding me of that classic dictionary definition:

Recursion:See Recursion

or my own favourite

Sea Water: See Water, Sea

 

[Mark]

So what have we got:

- If you have ME you can't have CFS

- Ergo if you have CFS you can't have ME

Presumably it unfolds: XMRV is in PWME but not in PWCFS, therefore anybody diagnosed with CFS who has XMRV must actually be misdiagnosed and really had ME, therefore our CFS programme is status quo, we defined it, it means malingerers, get your retrovirus out of our psychological programme.

Could it possibly fly?

Hold on: "ME is merely a belief, the belief that one has ME"...oh damn it this sure is a complicated bunch of illnesses...yuk...

 

[Sean]

Hmm. That was helpful of the CDC, really cleared things up.

NOT.

 

[Frickly]

Thanks Tansia.....all I can say is....sigh.....what a load of shiiiit....

 

[Cloud]

Unbelievable arrogance to think they can continue this charade. They have blood on their hands.

 

[eric_s]

Hi Tania

Could you please tell me where they mention ME on the CDC's website? I didn't find it. I've never seen a case definition for ME. If anyone knows where i can find one, please tell me.

This is a joke. I've never heard anyone seriously say ME and CFS is not the same thing before. Of course, different criteria will produce a different group of patients, because they exclude some who actually have the disease or include some who have nothing at all or something else, but i believe there's one illness, no matter how you call it.

I haven't visited the CDC's website for some years, probably. Back then, i didn't see anything that i thought is not right. But this is crazy. They actually have the nerve to put that "window" up right on the main page with 3 items you can click on: "Childhood Risk", "Strategic Plan" and "XMRV" (a link to their negative study). I can't believe it. Now this is enough, as far as i'm concerned. I wouldn't even wipe my * with anything that comes from them.
Obama, please clean that sh*house up, you're the boss after all.
It really seems they're having fun...
They mention low resting cortisol levels. Mine have been looked at several times, as far as i know, and no doctor has ever said something's not right with them.
Altered stress response. You're so funny. Before i got CFS i was actually training to become a paratrooper (seems like way back, probably i wouldn't be interested anymore, but it was cool to parachute for free). In the personal assessment, where they evaluate someone's personal features etc. i was described as very stress resistant and resilient. Even though, i'm not really well, i will take any test any day to compare my stress tolerance to that of CDC personnel. Please PM me, you f*ks.

Now, i'm happy i don't live in the USA or the UK. Doctors here generally don't know a lot about CFS and they have no treatment they can offer, but at least they're serious and no one seems to be actively trying to smear us.

I hope Dr. Alter will confirm what was leaked earlier. Then all of this will be over. If not, and it turns out XMRV is not connected to CFS, it will be hard. We will still win, but it will take some more struggle.
But nevertheless, we should stay calm and use our heads. If we verbally attack people that are actually open and well-intended, even though they say something we don't like, we risk losing them, instead of winning them over. And we need scientists, doctors, journalists and politicians. If we can convince them, things will be alright.

 

[V99]

http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

Bottom of the page

 

[V99]

CFS not being ME has been there for years.

So everyone who has ME gets CFS in the USA, and in the UK we get CFS/ME.

 

[eric_s]

Thanks V. But if everyone who has ME gets the CFS label, i don't get how CFS is not ME. That would only then not be a contradiction if ME is a subgroup of CFS. But the way the CDC sounds, they don't seem to see it like that. Or are they?

I would still like to see a case definition for ME.

I know that they have a watered down definition for CFS but at least as far as i'm concerned that does not change what CFS is. I believe it's the same as ME and once the underlying mechanism is known, this will be evident, even if there might be different triggers (this is really no more than a believe, but that's what i would bet my money on, if i had to). And all the other people that a lose definition will diagnose as CFS will have something else, even though technically they could be given the CFS diagnosis.

 

[Leitwolf]

I think one thing should be clear: If that XMRV things holds, CFS will certainly not remain CFS. Maybe CFS will be recycled to a synonym for burn-out, as it has been done in the past all over europe. Renaming diseases has a long tradition in medical "science". Schizophrenia for instance has completely changed its meaning over the decades. And a subtype of hysteria is called MS today ;-). And you can bet the farm on the CDC painting any XMRV related disease as something new, not related to the traditional ME or CFS and thus it will get a new name. After all, no one can prove that 80% or so of CFS-cases 20 or 30 years ago were related to XMRV.

 

[eric_s]

My guess is that in this case there will be a new name and everybody will have this. If XMRV is not the only possible trigger, then the people whose ME/CFS is not caused by XMRV will have to wait a bit longer until it's found in their cases too and then at least they will have "the new thing" too. I think the name CFS will disappear. People who have been diagnosed with CFS and don't have XMRV or whatever causes "real CFS" will get the correct diagnosis or be diagnosed with idiopathic chronic fatigue.
I don't think they can get away with saying the new "XMRV disease" is not what was formerly called CFS or ME because all of us have had the CFS or ME or ME/CFS diagnosis.

 

[urbantravels]

Blood samples still exist from the 80s outbreaks, do they not? Hypothetically XMRV could be found in those.

Researchers tracking the history of HIV have found it in stored blood samples from 1959 and 1960, so it doesn't seem impossible to me that XMRV could be similarly traced.

 

[Mya Symons]

OMG they are idiots!!!!


Supposedly the doctor who diagnosed me with CFS and Fibromyalgia was one of the foremost experts in that area on CFS, ME and Fibromyalgia. He believed there was a difference between CFS and ME. He told me that the difference between ME and CFS is how your MRI reads. If when your diagnosed they find something abnormal such as swelling of the brain or spinal cord; or brain lessions, brain scarring or holes, that means you have ME, not CFS.

This makes no sense to me since a lot of us do not get diagnosed until several years after the onset of the disease. As I understand, these things can come and go. Who knows if they are taking a scan of the brain at the "right" time. Further, who is to say that in some people, XMRV does NOT cause those type of brain symptoms?

I bet you they are going to eventually use something like this to try and say they were different diseases the whole time. I wonder if they will claim they told us that they were different diseases? I hope somebody keeps good records of what they have had on their site previously.

 

[taniaaust1]

My guess is that in this case there will be a new name and everybody will have this. If XMRV is not the only possible trigger, then the people whose ME/CFS is not caused by XMRV will have to wait a bit longer until it's found in their cases too and then at least they will have "the new thing" too. I think the name CFS will disappear. People who have been diagnosed with CFS and don't have XMRV or whatever causes "real CFS" will get the correct diagnosis or be diagnosed with idiopathic chronic fatigue.
I don't think they can get away with saying the new "XMRV disease" is not what was formerly called CFS or ME because all of us have had the CFS or ME or ME/CFS diagnosis.

XMRV may not be the caustive thing for our illness at all even if its found in most of us so hence they may not change the name. eg 10% of mono cases develop CFS, 10% of lyme patients end up developing CFS, 10% of Ross River virus cases go one to develop CFS, (there is another viral trigger for this illness too, i cant remember what, but that too about 10% of cases end up with CFS). None of those studies caused a change in the name. (i may be out with my percentages by a couple of percent, but it was all around 10% so the XMRV just fits with that pattern).

George?? worked out the stats on the numbers in the general pop who have XMRV and compared that to the percent of ones who get CFS and it worked out to be that 8.5% of those who get XMRV end up with CFS (based on if 3%, or maybe it was 4% of the general population having this). So that kind of all fits with the above pattern of developing CFS after an illness, but this time the trigger illness was just XMRV.

Even the WPI has stated that XMRV may not be causative.

 

[taniaaust1]

Hi Tania

Could you please tell me where they mention ME on the CDC's website? I didn't find it. I've never seen a case definition for ME. If anyone knows where i can find one, please tell me.

This is a joke. I've never heard anyone seriously say ME and CFS is not the same thing before. Of course, different criteria will produce a different group of patients, because they exclude some who actually have the disease or include some who have nothing at all or something else, but i believe there's one illness, no matter how you call it.

I see that V99 has already given you the address of the CDC page in which I based my mail on.

The CDC from as far back as I remember has always said they were different things, its just one had to go looking very hard all throu their site to find references of this.

The one i used is the clearest reference they had of them being different but there were (I dont know if those pages still exist or not) two other pages in which it was refered to in a more sneaky kind of way, that they were completely different things. (said in a way in which most would of missed what they were implying as they kind of said it in a twisted kind of way leaving what they were saying kind of open to debate, but I'd always took their pages to be saying they were different due to the unclear manner which looked almost like it had been written to confuse people.

does anyone know if those other two references of CFS and ME being different is still around on the CDC site somewhere?? If they are and someone provides the link.. you can see its talked of in a twisted way and someone who isnt suspecious would pass over the comments taking them just in the light which the CDC had hoped. I used to point out the unclear comments made by the CDC to many over the years on their site over these two things. But only quite recently had found out about the clear reference to this in which one cant mistake in any way at all. The CDC IS playing games with everyone.. relying on peoples ignorance of the situation!!! It's always done this and I cant see this about to change anytime soon.

They wont clarify properly as its their legal loophole. If anyone with CFS is damaged by the CDC recommendations as they in fact had ME, they wont be able to sue the CDC!! As all the CDC will say is that they were wrongly diagnosed!

We need to get that loophole closed so it cant be used by them when patients start to sue!! We need to force them to bring out ME into the open with its diagnostic criteria or say its exactly the same as CFS and hence ME patients should be following all the CFS recommendations too. ( which we all know will end up in the end with them being sued for causing harm to patients). At the moment they are passing the buck.. to what ME is.. so they can say they cant be blamed for wrong diagnosing, for patients being harmed.

If they are saying ME is a subgroup of CFS.. well they should be actually describing the subgroup so people know.

The CDC are not doing their job!! by ignoring ME. What they are doing should be taken to the highest places to force them to do the right thing.

Maybe CFS patients need to start up a "what in the hell have we got CDC?" compain.

 

[V99]

Thanks V. But if everyone who has ME gets the CFS label, i don't get how CFS is not ME. That would only then not be a contradiction if ME is a subgroup of CFS. But the way the CDC sounds, they don't seem to see it like that. Or are they?

I would still like to see a case definition for ME.

I know that they have a watered down definition for CFS but at least as far as i'm concerned that does not change what CFS is. I believe it's the same as ME and once the underlying mechanism is known, this will be evident, even if there might be different triggers (this is really no more than a believe, but that's what i would bet my money on, if i had to). And all the other people that a lose definition will diagnose as CFS will have something else, even though technically they could be given the CFS diagnosis.

This is what I think happened. The CDC looked into the Lake Tahoe outbreak. They didn't do the job properly, and more people got sick. So the government started to demand action from the CDC. At this point doctors around the world told them it was ME, they ignored this. (professional pride, ignorance, stupidity). They created CFS, never bothered with ME, and anyone who has ME can only be diagnosed with CFS.

 

[Finch]

Ask a simple question...

From the CDC's reply to Tania's simple and excellent question:

While CDC does not cover the topic of myalgic encephalomyelitis, we recommend that you review abstracts of reports and other publications by using the resources of the National Library of Medicine's PubMed service.

Basically, they refuse to answer her question and send her looking in all sorts of places to probably still not come up with a definitive answer. So it is up to the patient to figure out for herself whether or not she actually has ME, as doctors in the US do not seem to consider this diagnosis as far as I have ever heard.

From the CDC's website:

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

In other words, the outbreaks in the US in the 1980s WERE NOT WELL-DOCUMENTED! Why not, CDC?

My questions:

1.) Is there anyone with CFS who does not have some sort of neurologic and muscular symptoms? (Obviously, I'm talking about the original definition of CFS, not the empiric one. It's really not fair to change the definition of a disease after many thousands have already been diagnosed using a stricter criteria. I know that's not the topic here, but we can never get away from that.)

2.) Then what are the "signs" that distinguish the CFS neurologic and muscular symptoms from those of ME? (Tania's question - still unanswered. Not the CDC's "area," I guess.)

3.) Has anyone in the US received a diagnosis of ME rather than CFS, and how on earth did they accomplish that? (This I really would like to know the answer to - anyone?)

4.) Were the neurologic and muscular signs not present in the Incline Village patients who were given the original diagnosis of chronic fatigue syndrome? (Don't know - it wasn't "well-documented.")

Obviously I will not be asking the CDC these questions. I've already seen their answers.