CFIDS Association Symptom Survey

[Cort]

I think the survey was interesting; post-exertional malaise (despite the CDC's attempt to bury it) was right on top followed by sleep problems and muscle pain. I was a bit surprised by muscle pain - its not, I don't believe, one of the CDC's core symptoms in the 1994 definition -but its definitely one of my top symptoms and always has been.

Interestingly post exertional problems decreased a bit over time; not a huge amount - they were still way up there - but they weren't the top. I think that can only be due to people slowly learning how to manage their illness.

The survey could have been more comprehensive; nothing on problems standing, increased heart rate, heat intolerance, chemical sensitivities, libido...???? but it was interesting.

http://www.cfids.org/cfidslink/2009/090202.asp

Unfortunately I couldn't get the graphs in there - they were quite good. The average duration of this illness for people over 55 was 20 years!

Survey respondents checked the symptoms they experienced. I have analyzed these symptoms by age groups and graphed them by the most common symptom to the least common symptom. The most common symptoms for all age groups are post-exertion fatigue, unrefreshing sleep, muscle pain and concentration problems. The next most common symptoms for all age groups are headache, joint pain, sinus problems, eyes sensitive to light, depression and other sleep problems. Interestingly, some of the symptoms that are less common also seem to vary more by age group. For example, pelvic pain is more common in the under-25 year age group while urgent need to urinate is more common in the older age groups.

The same four symptoms that were most common – post-exertion fatigue, concentration problems, muscle pain and unrefreshing sleep – were also reported to be the most severe for all age groups. The severity of unrefreshing sleep decreased slightly in the older age groups. Also, the less common symptoms were reported as more severe in the older age groups. This may be an indication of conditions that evolve and co-occur with CFS as individuals age and remain ill.

Over the next few months we will conduct correlative and combinatorial analyses to see if we can find significant associations with cause, age, sex and symptoms. We will also integrate the family history information you provided to see if this helps us elucidate cause(s) and pathophysiology of CFS. Stay tuned, and thank you again for participating in this rich and important survey!

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[dannybex]

The average duration of this illness for people over 55 was 20 years!

My guess after looking at the rest of the chart is that figure is perhaps due to the almost complete lack of understanding about CFS/ME (not to mention the seriousness of the illness) 20-30 years ago.

As we learn more and more, hopefully that duration will drop dramatically over the next few years. I know a woman in her mid-sixties and another in her late fifties...both recovered within the last 3 years and have remained well.

d.

 

[Cort]

Hopefully so. It also makes me think that if you have this disease and don't want to still have it when you're 40 or 50 or 60 you'd better get active now to make sure the government is funding research into this disorder. It's not to any extent right now. In some ways the future is now and given how 'now' is the future doesn't look so good - it looks like alot of people in their fifties and sixties who've had this disease for over 20 years.

 

[Dolphin]

I think the survey was interesting; post-exertional malaise (despite the CDC's attempt to bury it) was right on top followed by sleep problems and muscle pain. I was a bit surprised by muscle pain - its not, I don't believe, one of the CDC's core symptoms in the 1994 definition -but its definitely one of my top symptoms and always has been.

Interestingly post exertional problems decreased a bit over time; not a huge amount - they were still way up there - but they weren't the top. I think that can only be due to people slowly learning how to manage their illness.

The survey could have been more comprehensive; nothing on problems standing, increased heart rate, heat intolerance, chemical sensitivities, libido...???? but it was interesting.

Support validating CFS research with your gift to the CFIDS Association of America. Donate now!

Good to see another thread on a topic many of us will have read about recently. This is exactly want I want from a forum.

Here's an excerpt from from the Fukuda definition including the symptoms it mentions:

http://www.annals.org/cgi/content/full/121/12/953

A case of the chronic fatigue syndrome is defined by the presence of the following:

1) clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset [has not been lifelong]; is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities;

and

2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:
self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;
sore throat;
tender cervical or axillary lymph nodes;
muscle pain,
multijoint pain without joint swelling or redness;
headaches of a new type, pattern, or severity;
unrefreshing sleep;
and
postexertional malaise lasting more than 24 hours.

As you can see, muscle pain is in there. I know some people say that they only get muscle fatigue and/or weakness rather than full muscle pain.

 

[Dolphin]

Interestingly post exertional problems decreased a bit over time; not a huge amount - they were still way up there - but they weren't the top. I think that can only be due to people slowly learning how to manage their illness.

What are you referring to? Is it this graph:
http://www.cfids.org/cfidslink/2009/fig1.pdf

Sorry to be awkward but post-exertional symptoms are top for all the age groups. It goes up from the first column to the second column. I think they'd probably all be within the range of no difference, statistically.

For most symptoms, the red or green column seems to be top which might be interesting. But there's not a huge difference.

 

[Cort]

I was referring to the second graph; in that one post exertion problems are actually never at the top - concentration problems are the top symptom until the last age group - where, interestingly enough, muscle pain is the top symptom.

http://www.cfids.org/cfidslink/2009/fig2.pdf

The top four symptoms are pretty close though.

 

[Dolphin]

I was referring to the second graph; in that one post exertion problems are actually never at the top - concentration problems are the top symptom until the last age group - where, interestingly enough, muscle pain is the top symptom.

http://www.cfids.org/cfidslink/2009/fig2.pdf

The top four symptoms are pretty close though.

Gotcha (apologies about that - I first read the survey a few weeks ago and when following the link there now couldn't see fig 2 for some reason but see it now).

It could also be that the demands to be active can be avoided to an extent when one is older. There may be some people over 40 who can live a sedate life while it might be harder to do if under 40.

 

[MEG]

CDC/CFS Advocacy

I am most interested in this forum. Being very familiar with the CFIDS Assoc, and by doing a lot of research, I feel I have a fair amount of knowledge about CFS. I am also a Registered Nurse/disabled. However, I had no idea that the CDC not playing fair. I have come to understand from the CFIDS Association that they have to push the NIH hard to do more research. Would you please suggest a way for me to get up to speed on what's happening with CDC? I too believe that if we don't fight NOW, and fight hard, not much will be done. And I, for one, am sick of being sick!

 

[Cort]

I've got some nice blogs you can check out. We can certainly use someone who's has expertise in the medical field.

There are two main problems; a researcher that's not doing very innovative research and does not appear interested in most of the outside research being done and a program that getting funded less and less every year.

You can find links to the blog and more information on the Making a Difference (MAD) About ME/CFS group that recently formed. Click on the community tab on the menu bar on the top of the page and go to social groups and join the MAD group or just go here (I think this will work: http://forums.aboutmecfs.org/group.php?groupid=4)

We're trying to force change at the agency! We've been underfunded way too long