• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

A very odd thing just happened to me

Sandman00747

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
I just got a call that I did not answer because I didn't recognize the number. They left a voicemail. It was the flippin' CDC wanting me to answer a brief survey about the state of my health. I have NEVER written or called the CDC ever. How did they get my number? What in the world is going on here? I'm sure not going to call them back. Are they finally worried since they know ME/CFS is still spreading rapidly around the world? I don't know but now I will have to cut Trump some slack regarding being paranoid!
 
Last edited:
B

barbc56

Senior Member
Messages
3,657
Could it be a sick joke or your name on some sort of petition or anything public about any health problems. I'm not really sure what can be seen or hacked on your phone or if there's even a difference.

Do you still have the voicemail or energy to transcribe what it said?

I did get several calls last year where I won a cruise or vacation but they weren't voicemails. With one, I kept repeating "Put me on your do not call list!" until I realized it was a recording! It was really quite eerie. There must be some kind of program which replicates the pauses, inflections and whatever else is needed to replicate someone talking to you to keep you on the phone. It even paused at one point as to give me a chance to make a reply. I don't remember why I answered as I usually don't for numbers I don't recognize.

I think I'm going to spend the rest of the day under my bed instead of in it. Just in case.
 
Sandman00747

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
rebar said:
I can not imagine the CDC makes random calls, out of the blue for participation in a survey. Does not make sense. The call was a set up for some type of solicitation.
Click to expand...

I can't imagine that either @rebar but I believe they did do this many years ago because I had a friend in Wichita, Ks. that was called for a survey and it was real because they then received forms in the mail to fill out concerning ME/CFS and he said he had the official logo, etc. I think you can google this survey the CDC did many years ago. I just

don't know what to think anymore, but like @barbc56 I'm going under my bed for awhile too! Sorry to say but I have no trust of our government any more, absolutely none. And this is in no way any kind of a political statement!
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
Hi @Sandman00747, do you still have the number saved as missed call in your phone? You could google it and check if it's an official CDC number. I often check numbers I don't know this way (to make sure it's worth calling back and not spam).

If it really is some kind of CDC survey, it could be a chance to educate about the reality of ME. I had a call from my insurance, and they asked how long I plan to be "too tired" to work and said there's no way I can retire in my 30ies because i "feel tired". After I explained what ME is really like and my restrictions in daily life (bedbound etc.) and how much I hate missing out on my life, she was very surprised, apologized and admitted to know nothing about ME and that she had only interpreted the name "chronic tiredness syndrome" (the horrible German translation).

My case is still being reviewed, but I feel that the calls (some more followed) worked better than the written correspondence to explain to what degree this illness destroys my life and that I'm definitely not enjoying life while I collect government cheques but want nothing more than to get better and get back to work. So maybe the survey could be a good opportunity for a little bit of advocacy. :)
 
Forbin

Forbin

Senior Member
Messages
966
I noticed that you're located in Kansas. I don't know if you live in Wichita, but the CDC has conducted a couple of surveys in Wichita concerning CFS.

This is from a 2006 press briefing with the late Dr. William Reeves.
REEVES: "The CDC CFS Research Group is responsible for approximately 80 peer-reviewed publications since 2000. Much of the work comes from a large-scale study that we conducted between 1992 and 2004 in Wichita, Kansas."
- - -
"First of all, we selected Wichita because its population, in terms of race, ethnicity, socio-economic status and education, mirrors the U.S. as a whole. Also, there is little migration in or out of Wichita, so we could survey a fairly stable community over a period of years, rather than just one point in time. And we were able to survey a population, not just people who are able to consult physicians.

The first objective in Wichita was to estimate the prevalence of CFS, the burden that it imposes on the population. To do this, we surveyed a quarter of the population of Wichita, and we collected information on 90,000 residents selected randomly. We then conducted more extensive clinical assessments of about 7,000 of those residents."
https://www.cdc.gov/media/transcripts/t061103.htm
Click to expand...
This CDC Study Overview goes into some detail concerning the Wichita data and how it was collected. It lists 21 different studies that have utilized the data (a partial list).
From 1997 through 2000, CDC conducted a population-based longitudinal surveillance study of CFS in Sedgwick County, Kansas. The surveillance study initially used random digit dialing to screen 90,316 Wichita residents (20% of the population) and located individuals with severe fatigue and a non-fatigued comparison group https://www.cdc.gov/cfs/pdf/wichita-data-access/wichita-clinical-study-overview.pdf
Click to expand...

My guess is you were called at random. It's also possible that whatever survey they are doing now has nothing to do with ME/CFS. The CDC may use Wichita as a data source for more than one condition.
 
Last edited:
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
The CDC does random telephone surveys. They also recruit patients who have seen doctors that they are working with. I wouldn't go giving away private healthcare information without verifying that they are really with the CDC first, but once you've done that, go for it, enlighten them.
 
You must log in or register to reply here.