ME/CFS Breaking News: CDC Releases Wacky Accounting of ME/CFS/Long Covid [really?] in the U.S.

And this is why ME/CFS patients can’t have nice things like treatments...

On December 8, the National Center for Health Statistics (NCHS) released survey findings updating the estimate of the number of people who have ME/CFS in the U.S. It raised the upper limit of Americans estimated to have ME/CFS from approximately 2.5 million to approximately 3.3 million people, or 1.3% of the U.S. population. (1)

NCHS is part of the Centers for Disease Control and Prevention (CDC).

Since 1984, some ME/CFS researchers, physicians, and journalists have appeared to intentionally muddle research findings. The new source of confusion—to no one’s surprise, I expect—was the number of people counted as ME/CFS patients who have Long Covid instead.

This “National Health Interview Survey” of 57,000 individuals was conducted between 2021 and 2022. The survey relied on self-reporting, counting people who replied “yes” to two questions: had a doctor or other health-care professional had ever told them they had ME or CFS, and do they still have it. (1)

The survey did reveal some interesting new data about who appears to have ME/CFS and where they live in the U.S. Some key findings called out in the NCHS Data Brief describing the survey were:

● In 2021–2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

● The percentage of adults who had ME/CFS increased with age through ages 60–69 and then declined among those age 70 and older.

● White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.

● Adults with a family income of less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%). [In other words, this is not a disease of the affluent.]

● The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence; it is not exclusively a disease of city-dwellers. (1)

These CDC researchers can’t help themselves from again inserting the factoid that many people who have ME/CFS remain undiagnosed:

“As the prevalence estimates in this report are based on a doctor’s diagnosis, adults who are undiagnosed are not included in this analysis. True prevalence estimates may be higher, as previous studies suggest that many people with ME/CFS are undiagnosed.” (1)

It’s unclear why CDC—and other—researchers continue to assert that “many” people with ME/CFS have not been diagnosed. On what is that based? The most recent ME/CFS reference in this report is from 2015, almost a decade ago. And, in fact, the prevalence estimates in this survey are not based on a doctor’s diagnosis; they’re based on what a sick person told an interviewer that he or she remembered a health professional telling them. (1)

The authors pointed out that the pandemic interfered with the survey: “Due to data collection disruptions caused by the COVID-19 pandemic in 2021 and 2022, 62.8% and 55.7% of the adult interviews were conducted at least partially by telephone, respectively.” (1)

While the official NCHS Data Brief didn’t refer to the pandemic or Long Covid in any other respect, experts interviewed after its release and the reporters describing the survey introduced Long Covid as a major factor in determining how many people in the US have ME/CFS.

Reporter Mike Stobbe wrote the Associated Press (AP) account of the survey, and it was the primary source used by many newspapers and online news outlets across the country. The official AP website featured a photo of a woman identified as having Long Covid alongside Stobbe’s article about the ME/CFS survey. (2)

Stobbe asserted that the increased totals of ME/CFS patients “is likely boosted by some of the patients with long COVID,” although that idea does not appear in the official brief.

“The report relied on patients’ memories, without verifying their diagnoses through medical records,” Stobbe reported. “That could lead to some overcounting, but experts believe only a fraction of the people with chronic fatigue syndrome are diagnosed, said Dr. Daniel Clauw, director of the University of Michigan’s Chronic Pain and Fatigue Research Center.” (2)

“It’s never, in the U.S., become a clinically popular diagnosis to give because there’s no drugs approved for it. There’s no treatment guidelines for it,” Clauw told him.

“The tally likely includes some patients with long COVID who were suffering from prolonged exhaustion, CDC officials said,” according to Stobbe. (2)

Who were these CDC officials? Where did they make those comments? There are no such comments in the official brief describing the survey.

“We think it’s the same illness,” Dr. Brayden Yellman, a specialist at the Bateman Horne Center in Salt Lake City, told Stobbe. (2)

One of Yellman’s patients, Hannah Powell, told AP, “When I go to the ER or to another doctor’s visit, instead of saying I have chronic fatigue syndrome, I usually say I have long COVID. And I am believed almost immediately.” (2)

Will there ever be an accurate count of how many people have ME/CFS if patients are now misleading doctors to get adequate treatment?

A small survey of newspapers and news websites revealed that many simply printed the AP report, which has become a common practice as newspapers and news sites have lost funding and are often left with greatly diminished staffs. In addition to the Washington Post, AXIOS, Click Houston, Daily Mail, Deseret News, Miami Times, New York Post, STAT, TheMessenger, and the Washington Examiner printed the AP story or some fraction thereof. (3-13)

On the Everyday Health website, reporter Don Rauf quoted from the study itself, noting that Elizabeth Unger, MD, chief of the CDC’s Chronic Viral Diseases Branch, and coauthors projected that ME/CFS costs the country between $18 and $51 million a year. (14)

Rauf also spoke to Michael Zeineh, MD, an associate professor of radiology with Stanford Health Care in California. “Certainly a lot of patients have experienced dismissal or disregard, with some healthcare providers lumping it all into being psychological. ... There’s a real syndrome going on here—we just don’t fully understand it,” Zeineh said. (14)

USA Today reporter Eduardo Cuervas spoke to Dr. Jesse Bracamonte, a family physician at the Mayo Clinic in Arizona, who emphasized that “They [ME/CFS patients] don’t have to fight this alone. There are other people in our country that are fighting this.” (15)

Cuervas added, “Untreated, the disease can contribute to heart failure, suicide and cancer.” (15)

The newspaper-of-record missing from this list is, of course, the New York Times.

On December 14, however, the Times published a beautifully interactive, prominent and compelling first-person account of Long Covid by information designer Giorgia Lupi, who’s been desperately ill for three years since first contracting Covid-19 in early 2020. She wrote that, among numerous other diagnoses, she’s been told she has ME/CFS. (14)

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?  Three years later, almost as much is known about Long Covid, which is also destroying untold numbers of lives around the world.

Do we really get anywhere by conflating the two?

BIBLIOGRAPHY
1.     Anjel Vahratian, Ph.D., M.P.H., Jin-Mann S. Lin, Ph.D., Jeanne Bertolli, Ph.D., M.P.H., and Elizabeth R. Unger, Ph.D., M.D. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022.” NCHS Data Brief No. 488, December 2023. US Department of Health and Human Services, Centers for Disease and Prevention, National Center for Health Statistics. Lead author Anjel Vahratian is with the National Center for Health Statistics, Division of Health Interview Statistics. The remaining authors—Jin-Mann S. Lin, Jeanne Bertolli, and Elizabeth R. Unger—are with the National Center for Emerging and Zoonotic Infectious Diseases, Division of High Consequence Pathogens and Pathology. DOI: https://dx.doi.org/10.15620/cdc:134504.
2.     Mike Stobbe. “Chronic fatigue syndrome is not rare, says new CDC survey. It affects 3.3 million U.S. adults.” Associated Press, December 8, 2023. https://apnews.com/article/chronic-fatigue-syndrome-long-covid-cdc-c7f3dddbe88ec40d70448743fd479b30
3.     Mike Stobbe. “Chronic fatigue syndrome is not rare, says new CDC survey. It affects 3.3 million U.S. adults.” Washington Post, December 8, 2023. https://www.washingtonpost.com/lifestyle/2023/12/08/chronic-fatigue-syndrome-long-covid-cdc/f4391a10-9586-11ee-9d5c-d462c9032daa_story.html
4.     Ivana Soric. “Exhausted America: CDC says 3.3 million people suffer Chronic Fatigue Syndrome.” AXIOS, December 8, 2023.
5.     Mike Stobbe. “Chronic fatigue syndrome is not rare, says new CDC survey. It affects 3.3 million U.S. adults.” Click Houston.com, December 8, 2023.|
6.     “Chronic fatigue syndrome is not rare, says new CDC survey. It...” Daily Mail, December, 8, 2023.
7.     Dennis Romboy. “CDC: Chronic fatigue syndrome more common than previously thought.” Deseret News, December 8, 2023.
8.     Mike Stobbe. “Chronic fatigue affects more than 3.3 million US adults.” Miami Times, December 13, 2023. https://www.miamitimesonline.com/lifestyles/health_wellness/chronic-fatigue-affects-3-3-million-us-adults/article_eae843b4-9955-11ee-8294-7f7f93298b65.html
9.     Brook Steinberg. “Chronic fatigue syndrome is more widespread than thought: CDC finds 3.3M diagnosed—or more.” New York Post, December 11, 2023.
10.  Mike Stobbe. "Chronic fatigue syndrome is not rare, says new CDC survey. It affects 3.3 million U.S. adults." Click Houston.com (KPRC), December 8, 2023.
11.  "Chronic fatigue syndrome is not rare, says new CDC survey. It affects 3.3 million U.S. adults." STAT, December 8, 2023.
12.  Mansur Shaheen. “Chronic Fatigue Syndrome is Impacting Millions of Americans—With Long COVID to Blame in Many Cases.” TheMessenger, December 8, 2023.
13.  Brady Knox. “CDC finds 3.3 million adults have Chronic Fatigue Syndrome.” Washington Examiner, December 2023.
14.  Giorgia Lupi. “1,374 Days: My Life With Long Covid.” New York Times, December 14, 2023. https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html
15.  Don Rauf. “Chronic Fatigue Syndrome Is More Common Than We Thought.” Everyday Health, December 12, 2023.
16.  Eduardo Cuevas. “Chronic fatigue affects far more Americans than previously thought.” USA Today, December 8, 2023.
17.  Giorgia Lupi. “1,374 Days—My Life With Long Covid.” New York Times, December 14, 2023. https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html

ABOUT THE AUTHOR
          Neenyah Ostrom was the first reporter in the United States to report weekly for a decade on ME/CFS. Her reporting on the Chronic Fatigue Syndrome epidemic from 1988-1997 is getting increased attention thanks to Robert F. Kennedy Jr.  He discusses her work extensively in his 2022 best seller, The Real Anthony Fauci. Ostrom’s groundbreaking reporting on Chronic Fatigue Syndrome and AIDS appeared in the New York Nativefrom 1988 to 1997.
         Ostrom is the author of four books about the Chronic Fatigue Syndrome epidemic: What Really Killed Gilda Radner? Frontline Reports On The Chronic Fatigue Syndrome Epidemic (1991; TNM Inc., New York, NY), 50 Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS(1992; TNM Inc. and St. Martin’s Press, New York, NY; published in Japanese by Shindan-to-Chiryo, 1993; and in French by Les Editions Logiques, 1994); America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS, (1993; TNM Inc., New York, NY); and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS Updated 2nd Edition (2022, available as a Kindle ebook and paperback on Amazon.com). Her most recent book, Ampligen: The Battle for a Promising ME/CFS Drug(2022) is available as a Kindle ebook and paperback on Amazon.com
            In 1995, Ostrom and New York Native were recognized as having reported one of the top 25 most-censored stories in the U.S. press by 1995’s Censored: The News That Didn’t Make The News And Why (The 1995 Project Censored Yearbook by Sonoma State University Professor Carl Jensen, introduction by Michael Crichton; published by Four Walls Eight Windows, New York, NY, 1995).
Ostrom is ghostwriter/editor of seven popular science books. Additionally, she was an editor of Total Breast Health: The Power Food Solution For Health And Wellness by Robin Keuneke, which was chosen as a Publishers Weekly “Best Book of 1998” in the category of Breast Health (Kensington Publishing Corp., April 1998).