CDC collects data on ME and CFS
Flawed info harms people with ME
The CDC recently published an article regarding ME and CFS statistics based on the national Behavioral Risk Factor Surveillance System (BRFSS) health survey from 2021/2022.
The report stated that 1.3% of people surveyed said they had been told they had ME or CFS. This publication generated several mainstream news stories.
(BRFSS is explained in supplemental info at the end of this article.)
As this is a long article, here are the main points covered.
Bullet points
Thoughts on the survey findings
1.3% is based on faulty data for a number of reasons
Prevalence numbers are similar to what states found in 2014 and 2016 using the same questions
Articles written based on this publication mischaracterize the reality of living with ME
What I would like to see journalists include in mainstream articles
I think the prevalence of ME (the distinct disease) is closer to 0.4%
Thoughts on the Survey Findings
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022 reports information derived from a survey of U.S. citizens.
My initial thoughts about some of the findings:
1.3% have ME/CFS - Because the question included “CFS” which does not require post-exertional malaise, it is entirely possible many who have had missed diagnosis or just fatigue are included in that number.
Aged 60-69 are the most diagnosed group - I’m in that age group as are so many who were part of the outbreaks in the 1980s. Also many in that age group may have chronic fatigue due to various health issues. The paper Chronic Illness and Fatigue in Older Individuals: A Systematic Review states: “Fatigue is a symptom experienced by 40%–74% of older individuals in the United States”.
Lower income people are more likely to have ME/CFS - From my observation, the lower the income the less likely a person is able to pursue a diagnosis other than Chronic Fatigue Syndrome.
In my experience from talking to people who have been given a CFS diagnosis, it is often applied and then left in place when patients have little access to expert doctors to rule out many of the conditions that are misdiagnosed as CFS. I have seen many find out they have vitamin/mineral deficiencies, thyroid issues, cancer and other (often treatable) causes for their fatigue.Numbers increased with rurality of residence - I think this echoes the lower income finding. Less access to experts leads to a CFS diagnosis being given for conditions that require specialists that are often not available in rural areas.
1.3% is based on faulty data for a number of reasons
I have been skeptical of the inflated prevalence numbers given for ME over the years. Based on other research, I am confident that the patients who have ME as per the International Consensus Criteria (ICC) are a much smaller group than those who are diagnosed using CFS-Fukuda.
In this survey the number of people having ME/CFS was based on a “yes” response to the following two survey questions:
Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?
and
Do you still have Chronic Fatigue Syndrome (CFS) or ME?
The vague CFS diagnosis has been widely disseminated by the CDC to medical professionals. The CDC has never promoted information about the diagnostic criteria for myalgic encephalomyelitis.
The CDC first promoted the CFS diagnosis with the 1994 Fukuda definition. Then the CDC published a CFS toolkit for medical professionals which first appeared backed up by the Internet Archive in October 2011.
This toolkit provides guidance to diagnose CFS and includes treatment guidance promoting cognitive behavior therapy (CBT) and graded exercise therapy (GET). While this toolkit is no longer included on the CDC website, I don’t believe there has ever been a true effort to notify doctors that it is no longer a valid toolkit.
Important to note that this toolkit does NOT have a date on the document itself. So doctors who come across this document now would not know it is outdated.
Background info
I discuss issues with labels and diagnosis of ME and CFS in the following articles.
Prevalence numbers are similar to what states found in 2014 and 2016 using the same questions
Some articles are saying that counting people with ME and CFS has never been done before. It has been done before, but it was done in 2021/2022 using responses from across the country instead of in specific states. The table shown is based on information available online and information received from NY State Health Dept.
Note: I contacted the public affairs office at the U.S. National Center for Health Statistics to get some information about this study and to ask when this kind of survey had been done in the past. According to them, New York state was the only state to incorporate the CFS or ME question in 2019. The public affairs office was not able to tell me more about 2014 or 2016 than I had found on my own.
I have contacted New York state hoping to get information about their survey of CFS and ME in 2019.
Update March 2024: I received information from the NY State Health Dept. I have updated the charts to reflect the new information. NY State surveyed a much larger group of people than any of the other surveys and found a lower percentage of those who were told they had ME or CFS and a lower number of those who were still ill at the time of the survey.
I found it interesting that the percent of people answering the question about having CFS or ME was statistically very similar between all of those years and what was found in this recent survey. Previous years showed that in 2014 there was an average of 1.28% and 2016 had an average of 1.16% of people who felt they still had CFS or ME.
For those who are saying the numbers reflect a lot of people with Long COVID being given an ME or CFS diagnosis, that is not based on the facts shown in previous surveys.
Articles written based on this publication mischaracterize the reality of living with ME
The focus on fatigue in most articles continues to undermine credibility about ME being a seriously debilitating neuroimmune disease.
Neenyah Ostrom wrote an article about this report as well as some of the mainstream reporting in ME/CFS Breaking News: CDC Releases Wacky Accounting of ME/CFS/Long Covid [really?] in the U.S. The article states:
“If this all seems rather pathetic and inadequate to you, it does to me, too. Almost exactly 40 years later, this is all the most-respected health agency in the world has to offer ME/CFS patients?”
I recommend reading Ostrom’s article to see concerns raised about the mainstream reporting based on the CDC publication.
What I would like to see journalists include in mainstream articles
ME is a distinct acquired disease while chronic fatigue syndrome is a vague criteria lumping multiple patient groups under one label which does not require post-exertional malaise and encompasses many different patient groups based on fatigue.
Clarification that in this context ME/CFS is referring to ME and CFS lumped together.
An accurate portrayal of the reality of very Severe ME. I have yet to see an article that shows the seriousness of Severe ME or explains that once someone contracts ME that full recovery is unlikely.
I think the prevalence of ME (the distinct disease) is closer to 0.4%
I have been following information about prevalence estimates for myalgic encephalomyelitis for a long time. I think the number of 0.4% is more realistic. That would equate to about 1.4 million people having ME in the U.S.
Their estimate of 1.3% of people with ME and CFS equates to almost 4.5 million.
We need doctors to thoroughly screen everyone who has a CFS (or ME) diagnosis to confirm the diagnosis based on the International Consensus Criteria and confirm that no other treatable condition has been missed.
If only half of the people who were told they have CFS don’t have ME, that is a terrible track record.
In order to have useful prevalence numbers we need more doctors educated on how to rescreen everyone with a CFS or ME/CFS diagnosis. The International Consensus Primer states:
“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
The U.S. Health and Human Services Department could widely disseminate information based on what we already know about myalgic encephalomyelitis. This would cost very little while having a huge positive impact on the lives of millions of Americans.
Another avenue out of this mess is to start using some of the biomarkers we already know about. See information about possible biomarkers HERE.
I hope 2024 offers some progress in making sure everyone with a CFS or ME diagnosis is thoroughly screened and are counted accurately.
Colleen
Information provided here or in comments is not to be considered medical advice
Sources
Links for the table:
2014 Kansas BRFSS https://www.kdhe.ks.gov/ArchiveCenter/ViewFile/Item/2234
2014 North Carolina BRFSS https://schs.dph.ncdhhs.gov/data/brfss/2014/nc/all/nc06q01.html
2016 Kansas BRFSS https://www.kdhe.ks.gov/ArchiveCenter/ViewFile/Item/1432
2016 North Carolina BRFSS https://schs.dph.ncdhhs.gov/data/brfss/2016/nc/risk/nc04q01.html
2016 Connecticut BRFSS https://portal.ct.gov/-/media/Departments-and-Agencies/DPH/BRFSS/CTBRFSS2016_Summary_Tables.pdf
ME/CFS in adults 2021/2022 https://www.cdc.gov/nchs/products/databriefs/db488.htm
Other Sources
Vahratian A, Lin JS, Bertolli J, Unger ER. Myalgic encephalomyelitis/chronic fatigue syndrome in adults: United States, 2021–2022. NCHS Data Brief, no 488. Hyattsville, MD: National Center for Health Statistics. 2023.
DOI: https://dx.doi.org/10.15620/cdc:134504
Torossian M, Jacelon CS. Chronic Illness and Fatigue in Older Individuals: A Systematic Review. Rehabil Nurs. 2021 May-Jun 01;46(3):125-136. doi: 10.1097/RNJ.0000000000000278. PMID: 32657851; PMCID: PMC7935454. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7935454/
Supplemental info:
What is BRFSS from the CDC Website:
“The Behavioral Risk Factor Surveillance System (BRFSS) is the nation’s premier system of health-related telephone surveys that collect state data about U.S. residents regarding their health-related risk behaviors, chronic health conditions, and use of preventive services. Established in 1984 with 15 states, BRFSS now collects data in all 50 states as well as the District of Columbia and three U.S. territories. BRFSS completes more than 400,000 adult interviews each year, making it the largest continuously conducted health survey system in the world.”
MEAction article about the 2019 BRFSS:
“In the next few months, some states will begin field-testing the questions. We will keep an eye on this issue and inform you what happens and what next steps to take.”
I didn’t see anything more about this on MEAction’s website.
Report about BRFSS from Dr. Unger at the March 11, 2019 ME/CFS Stakeholder and Communication Conference Call:
“I’ll round-out our surveillance activities with a quick update on the behavioral risk factor surveillance system, the BRFSS. For those new to this initiative, CDC’s BRFSS program partners with state health departments. It was established in 1984 with 15 states participating and it now includes all 50 states. In April 2018, based on our proposal and advocacy support, the BRFSS committee incorporated ME/CFS questions as an optional module into the 2019 state-based survey. Participating states will gather data to monitor ME/CFS prevalence, healthcare access, risk factors, and comorbidities. The ME/CFS module includes those used as state-added questions in the 2014 and 2016 BRFSS surveys. Those questions are, “Have you ever been told by a doctor or other healthcare professional that you have chronic fatigue syndrome, CFS, or myalgic encephalomyelitis, ME?” If the response is yes, the second question is, “Do you still have CFS or ME?”
The optional module includes the third question, which was added to probe disability. “Thinking about your CFS or ME during the past six months, how many hours a week on average have you been able to work at a job or business for pay?” We don’t know yet how many states will include this module for the 2019 BRFSS survey; however, we’ve secured funds to continue the optional ME/CFS module in the 2020 survey as well. Leveraging this existing surveillance system is a cost-effective way to monitor prevalence trends and risk factors associated with self-reported provider diagnosis of ME/CFS in the U.S. This is similar to the Canadian community health survey. This will make the U.S. the second country tracking ME/CFS to an ongoing surveillance system.”