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New Understanding of Chronic Fatigue Can Pave Way to Better Treatment

JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Gijs said:
There is no hard data. It is about fatique in general not ME. 'Real' ME patiënts are rare. This make big ME studies even more complicated. Real ME is one disease not heterogenic at all. If their are really millions of ME patiënts this disease would be much more regonised by ordinary people because many people would know some patiënts, that is not the case. Millions is bullshit, sorry.
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Opinion only. The following scientists signed a letter asking the government for increased funding for CFS with the only-slightly-lower 8XX,XXX - 2.5 million figure: Leonard Jason, Ron Davis, Dr Light, Dr Nahle, Derek Enlander, Jarred Younger, etc etc.

The 1 - 2.5 million figure is gleaned from percentage prevalence, one of the lower values, multiplied by the number of people living in the US today. It's slightly higher now because it was multiplied by the population, which has increased since the previous figure was calculated by Jason et al.

You're right to say that it's not based off of the CCC, which did not exist at the time. However, even Fukuda's CFS is not simply being fatigued! More info:

In 1993, Jason and colleagues interviewed a random community-based sample of adults in Chicago (9). Those individuals who self-reported having CFS or many of the symptoms of CFS were examined by a physician and interviewed by a psychiatrist in order to determine whether they met CFS case criteria. The research team diagnosed 0.2% of the sample with current CFS, a number higher than expected, given rates from past epidemiological studies. This rate of 200 individuals per 100,000 was considerably higher than the rate originally reported by the CDC. The sample size for this study, however, was relatively small (N = 1,031).
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And

In a larger study conducted from 1995 to 1998, Jason and colleagues (10) screened a random sample of 18,675 individuals for CFS symptomatology. Approximately .42% (420 per 100,000) of the sample was determined to have CFS, with rates being higher among Latino and African American respondents compared to White respondents (10). The results of this epidemiological study suggested that this illness may affect approximately 800,000 people in the United States.
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Both from here:

Jason, L. A., Porter, N., Brown, M., Anderson, V., Brown, A., Hunnell, J., & Lerch, A. (2009). CFS: A Review of Epidemiology and Natural History Studies. Bulletin of the IACFS/ME, 17(3), 88–106.

The 0.42% prevalence rate was from a 'wave' of CFS cases that broke out in the 1990s. It's possible that the 0.2% may be more accurate today.

Prevalence varies from as low as 0.2% to as high as 6.41%
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Says the Aussie team led by M-Grasnik. She is also referring to the 1994 Fukuda rather than to CCC, because this is a meta-analysis. That's from here:

Johnston, S., Brenu, E. W., Staines, D., & Marshall-Gradisnik, S. (2013). The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis. Clinical Epidemiology, 5, 105–110. http://doi.org/10.2147/CLEP.S39876

The overall, pooled prevalence for self-reported CFS/ME was 3.48% (95% CI: 2.36–4.60) and high heterogeneity was observed (I2 = 58%). All samples were community-based. The overall, pooled prevalence of CFS/ME detected with clinical assessment was low at 0.76% (95% CI: 0.23–1.29) and no heterogeneity was detected (I2 = 0%). Heterogeneity remained lower than self-reporting studies when estimates were systematically removed during sensitivity analysis. Prevalence however, was lower in community samples (0.87%; 0.32–1.42) than in primary care samples (1.72%; 1.40–2.04). Low heterogeneity (I2 = 19%) was found among community samples. Moderate heterogeneity was detected between the three primary care samples (I2 = 48%).
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So Grasnik, after having analysed all of the Fukuda stuff, found prevalence to be 3.48% on average; though when physicians were asked to look for it, they found it to be at 0.76%. Let's be conservative and stick to the 0.76%.

The US population was 318.9 million in 2014.

0.2% x 318.9 million = 637,800 = lowest possible estimate

0.76% x 318.9 million = 2,423,640 = estimate of prevalence from diagnosing physicians

This seems pretty well in line with the figure given. Since there are multiple epidemiological studies, just 'picking' one would seem foolish, so people took M-G's work and Jason's work together, and that's how someone estimated the 8XX,XXX-2.5 million in the US. I don't think it's out of the question, based off of what I've read.

I don't think there are prevalence studies for CCC or ICC criteria; it would be nice if there were. In fact, that's M-G's recommendation at the end of her epidemiology article:

Advances in clinical case definitions during the past 10 years such as the Canadian Consensus Criteria have received little attention in prevalence research. Future assessments of prevalence should consider adopting more recent developments, such as the newly available International Consensus Criteria. This move could improve the surveillance of more specific cases found within CFS.
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I mostly did this research for myself, to double-check. :)

-J
 
eastcoast12

eastcoast12

Senior Member
Messages
136
Location
Long Island ny
I think naturopath Chiropracter was a dead give away that this article was goin south fast.
Recent interview I over heard:

Interviewer-So Doctor toboggan, Dr. Mantis Toboggan, welcome to our show. So what fields of Medicine do you practice.

Dr toboggan- well I practice proctology and a new exciting field of quantum healing.
Interviewer- can you explain quantum healing?

Dr toboggan- sure... When I get sick I watch the James Bond movie quantum of solace and I feel healed.

Interviewer- so how does your treatments help help people with cfs

Dr toboggan- well it's quite simple. These people are a bunch of lazy moochers that need to get off the couch. I come by their house, perform the proctology exam and wouldnt you know it... Boom, they get right up. After their up I pop in quantum of solace to begin the healing process. All that's wrong with these people is they're anal retentive fear beliefs that cause them to stay sick. Don't worry I got a peer reviews paper coming out soon. It's really great, all the reviewers are my friends. We have a great time trying to come up with unique bullshit interventions for these psychos. It's a real hoot

Interviewer- ahhhhmmmm, dr toboggan with your medical background don't you think your a bit under qualified to make these diagnosis? And what does proctology have to do with cfs?

Dr.toboggan-hey if they don't like quantum of solace or if they don't jump up during the proctology exam, it's they're own fault. They obviously do t want to get better

I love how these freaks come out of the woodwork with no qualifications and spew bullshit.
I teach science (prob not anymore) but if I walked in and started shoveling bullshit about the world is flat, stars are just farts that floated to space and the devil is responsible for the aurora borealis, I'd be fired(tenured so not fired) but I wouldn't be allowed in another classroomor near kids again. These idiots(ex. dr oz) preach bullshit that calm has the potential to do real harm and it's ok. Man once politics gets involved
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
What was so surprising, though, was that he really started with the hard science and then floated away on the winds of supposed 'common sense medicine' that is so 'common sense' it apparently requires no evidence. So disappointing.

It actually wasn't naturopath or chiropractor that pinged me... it was the "exercise physiologist" part. I was like,

70305746.jpg
 
G

Groggy Doggy

Guest
Messages
1,130
sarah darwins said:
Isn't that like saying that if we could stop having ME/CFS then we could stop having ME/CFS?
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.

Of course, yes! But, I was trying to looking at it from the authors point of view.

The reason I bring this up, is because I hear the "exercise" topic frequently from my family, friends, and strangers, and found that I need to break it down into steps. So when I hear, "If you exercised everyday you wouldn't need to take any medications" "If you exercised you would feel better" "When was the last time you exercised?" ....I respond with "You are lacking knowledge, because currently I would pay a steep price in exercising everyday. When I can get to the point of wellness that I can exercise daily (and increase it), without paying a heavy price, then I feel many of the symptoms you observe would disappear"

I know these types of 'exercise' comments are frustrating (eye rolling), but to a person that does not have ME, it's a way I have found that is helpful. So far, not a single person (that makes an "exercise" comment) is interested in reading about the upcoming NIH study, or any published studies, or any articles. They just want to hear MY response; and they want to feel validated they have THE answer.

So some people just stop, at this point in the conversation...but for others it opens the door to further questions such as "so what are you doing to get to the point where you can start exercising again....or... so what medications are you taking that will get you there"

I realize that many healthy people are insistent to "having the solution" to my path of wellness. And its not worth repeating, here, all the numerous comments and suggestions that we all have heard. But I feel that ME has a bad rap when it comes to the topic of exercise, so I thought I would respond to the posted article.

GD :dog:
 
M

me/cfs 27931

Guest
Messages
1,294
We have to make sure they have a healthy diet. Protein should be the centerpiece of an anti-fatigue diet. It doesn’t have to be animal protein, but protein is kind of the opposite of what sugary foods do... We also make sure they eat more vegetables.
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Eat more protein. Eat more vegetables. Stop eating sugar. Eat my anti-fatigue diet.

It is difficult to stick to a protocol like this... We can create the perfect treatment plan, but if it’s not followed, then we’re only going to see a certain percentage of improvement.
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I have the perfect treatment plan for you. If you continue to be fatigued, it's because you aren't following my plan, which is perfect.

Trust me. I'm a doctor.
 
G

Gijs

Senior Member
Messages
691
JaimeS said:
Opinion only. The following scientists signed a letter asking the government for increased funding for CFS with the only-slightly-lower 8XX,XXX - 2.5 million figure: Leonard Jason, Ron Davis, Dr Light, Dr Nahle, Derek Enlander, Jarred Younger, etc etc.

The 1 - 2.5 million figure is gleaned from percentage prevalence, one of the lower values, multiplied by the number of people living in the US today. It's slightly higher now because it was multiplied by the population, which has increased since the previous figure was calculated by Jason et al.

You're right to say that it's not based off of the CCC, which did not exist at the time. However, even Fukuda's CFS is not simply being fatigued! More info:



And



Both from here:

Jason, L. A., Porter, N., Brown, M., Anderson, V., Brown, A., Hunnell, J., & Lerch, A. (2009). CFS: A Review of Epidemiology and Natural History Studies. Bulletin of the IACFS/ME, 17(3), 88–106.

The 0.42% prevalence rate was from a 'wave' of CFS cases that broke out in the 1990s. It's possible that the 0.2% may be more accurate today.



Says the Aussie team led by M-Grasnik. She is also referring to the 1994 Fukuda rather than to CCC, because this is a meta-analysis. That's from here:

Johnston, S., Brenu, E. W., Staines, D., & Marshall-Gradisnik, S. (2013). The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis. Clinical Epidemiology, 5, 105–110. http://doi.org/10.2147/CLEP.S39876



So Grasnik, after having analysed all of the Fukuda stuff, found prevalence to be 3.48% on average; though when physicians were asked to look for it, they found it to be at 0.76%. Let's be conservative and stick to the 0.76%.

The US population was 318.9 million in 2014.

0.2% x 318.9 million = 637,800 = lowest possible estimate

0.76% x 318.9 million = 2,423,640 = estimate of prevalence from diagnosing physicians

This seems pretty well in line with the figure given. Since there are multiple epidemiological studies, just 'picking' one would seem foolish, so people took M-G's work and Jason's work together, and that's how someone estimated the 8XX,XXX-2.5 million in the US. I don't think it's out of the question, based off of what I've read.

I don't think there are prevalence studies for CCC or ICC criteria; it would be nice if there were. In fact, that's M-G's recommendation at the end of her epidemiology article:



I mostly did this research for myself, to double-check. :)

-J
Click to expand...

Like i said before Fatique studies and Statistically very poor science. Scientists always exaggerate figures so they can get more money for research. I even think that 600.000 patiënts would be too much. Especially ICC/CCC real ME patiënts.
 
aaron_c

aaron_c

Senior Member
Messages
691
Well done @JaimeS. I liked your comments on the article's page even more. I wonder: Will the supposed expert feel shamed enough to educate himself a bit more?

I do have one quibble:

JaimeS said:
if it screws with your neurotransmitters to improve your mood, it's doing the job of an antidepressant and should likely be called one
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I can think of a number of things that Naturopaths might do that would effect neurotransmitters but would not be antidepressants. Treatments to either increase or decrease copper, for instance. Or iron. Or methylation. I, for one, would be confused if these were included under the banner of antidepressants. Is this what he was talking about? I have no idea. But it seems possible to me.

As I said before, I agree with everything else you wrote (and with such excellent style). I think we all like it when Jaime gets Angry and Jaime Smash.
 
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G

Groggy Doggy

Guest
Messages
1,130
I would like to see Dr. Chad Larson on PR so we can ask him questions, since he seems confident in his problem solving ability to heal our illness. I want to know 'back to the basics' things like... what are the treatments he prescribes, what diagnostics does he use to determine what treatments to prescribe, & how many patients are using each treatment. It's too bad that the author did not ask tougher questions, because I have a long list of them for Dr Larson.
 
Comet

Comet

I'm Not Imaginary
Messages
694
Actually, sticking to his program sounds FAR easier than having ME/CFS. Cut out sugar, caffeine, eat healthy protein, drink water, eat yummy veggies, exercise and I'm cured? Does he realize what it's like living with this disease every day?

That's part of what is so insulting about this sort of garbage - people so misinformed about our disease that they think sticking to a program like that and being cured is more difficult that what we must do to physically conquer the most basic tasks every day.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
aaron_c said:
Treatments to either increase or decrease copper, for instance. Or iron. Or methylation. I, for one, would be confused if these were included under the banner of antidepressants. Is this what he was talking about? I have no idea. But it seems possible to me.
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Fair enough. I was thinking of herbs and nutraceuticals that affect neurotransmitters directly, but you're absolutely right.

aaron_c said:
I think we all like it when Jaime gets Angry and Jaime Smash.
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Full points for Marvel-universe quotations, sir.

the-credible-hulk.jpg
 
JPV

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Woolie said:
Really?

Then what you still doing here, JPV? Take the cure and reclaim your life!
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I don't have MS so I'm not sure that her approach applies to me. Paul Jaminet's Perfect Health Diet does help me a lot and seems like a better fit for my situation.

I've also gotten a good bit of relief from taking probiotics, such as Miyarasin, so that's another avenue that seems to work very well for me.

Still not 100% so I'm on here, much less than before, looking for info that might lead to even more relief.

Either way, regardless of what you think, Terry Wahls is a very credible advocate of the power of good nutrition in the healing process.
 
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