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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New info on CFS, looks good

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
I don't know anything about this website. I was looking at info about mitral valve prolapse. And what do I see? I see a little rotating ad spot with one of them has "RISK" and Chronic Fatigue Syndrome with new information. So I clicked on it. I went through all of the slides. Pretty good. They used the 1994 Fukuda criteria for symptoms, but that is to be expected.

But, the pictures seemed to accurately reflect our situation. Also, no CBT or GET under treatments. Some other info came from CDC. But they seemed to pick the better information. It says this is info from doctors. I with there was a place to leave comments. I would tell them what a good job they did.

http://www.medicinenet.com/chronic_fatigue_syndrome_pictures_slideshow/article.htm

Are we winning the war?

Tina
 
Messages
75
Thanks

Thanks for posting this, I've never seen it before. I hate to burst the bubble, but most of the information in the slides has been known in the CFS community for years. This slide presentation appears to be more geared toward the general public as an introduction to the illness.

Slide 1: "In some cases, CFS can persist for years." This is a bizarre statement considering that the criteria to be dx with CFIDS is at least 6 months of severe fatigue, among other symptoms. I would argue in the vast majority of cases, CFS persists for years. (unfortunate, but true)

Slide 12: "Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up."
I'm wondering if they included patients with major depressive disorder because that is such a large variation in improvement rates.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I personally was impressed with that sideshow. It was far better then most of the online stuff we generally see at medical info sites.

Im extremely impressed with slide 5 which lists ME as a separate condition to CFS. All of us who have ME should be happy to see a distinction made here.

Similar Medical Conditions
A number of illnesses have been described that have similar symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis. Being chronically fatigued is a symptom that is generally associated with all of them

I was impressed with slide 12s info which I think does help get throu to general public about the serious of things and for once accurate info based on studies being told.. and shows most of us (who unfortunately do carry the CFS diagnoses currently) dont just get better but remain sick. (yes of cause the recovery rate listed there thou is for CFS not for ME but it was CFS they were talking about there and not ME).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Thanks for posting this, I've never seen it before. I hate to burst the bubble, but most of the information in the slides has been known in the CFS community for years. This slide presentation appears to be more geared toward the general public as an introduction to the illness.

Slide 1: "In some cases, CFS can persist for years." This is a bizarre statement considering that the criteria to be dx with CFIDS is at least 6 months of severe fatigue, among other symptoms. I would argue in the vast majority of cases, CFS persists for years. (unfortunate, but true)

Slide 12: "Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up."
I'm wondering if they included patients with major depressive disorder because that is such a large variation in improvement rates.

It is known to the ME/CFS community but one rarely sees such info on sites giving out medical info.

Yes.. slide 12 is talking about CFS study so yes would not just include the ME patient group but ones with all kinds of other ilnesses which come under the CFS banner.

(the CFS info slideshow 5 lists ME as being a different illness to CFS).

"In some cases, CFS can persist for years".. there is nothing untrue about that statement. (once again they are talking about CFS and not ME which they did point out was a different illness to CFS)
 

Desdinova

Senior Member
Messages
276
Location
USA
Interesting a little puzzled by why Web MD has another site by another name? It seems a little redundant. But not mentioning Antidepressants, CBT and GET was a nice touch.
 
Messages
75
No one can definitively say M.E is not the same illness as CFS as there are no lab tests to distinguish either. IMO, CFS is a poor term for describing M.E. The CDC is to blame here. Same illness, different names.


It is known to the ME/CFS community but one rarely sees such info on sites giving out medical info.

Yes.. slide 12 is talking about CFS study so yes would not just include the ME patient group but ones with all kinds of other ilnesses which come under the CFS banner.

(the CFS info slideshow 5 lists ME as being a different illness to CFS).

"In some cases, CFS can persist for years".. there is nothing untrue about that statement. (once again they are talking about CFS and not ME which they did point out was a different illness to CFS)
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
For example, CDC's research has shown that those who have CFS for two years or less were more likely to improve. It's not known if early intervention is responsible for this more favorable outcome; however, the longer a person is ill before diagnosis, the more complicated the course of the illness appears to be.

Sounds like a circular argument to me.

I personally think the advice is average at best. "There are no physical signs that identify CFS, and there are no diagnostic laboratory tests for CFS."
That is a really bad way to put it because it sounds like there are no medical abnormalities. There are (as we know from all the research), but they aren't specific. A better way would be that there are medical abnormalities found in blood tests, but none are specific enough to be used for diagnosis of CFS.
We haven't yet discovered specific biomarkers for many types of cancer yet either (biomarkers that would lead to clinical blood tests), but most people might not realise that.