The Truth About "Recovered" MECFS Patients in Lyndonville - Based on 25 Year Follow Up by Dr. David Bell
The basics
David Bells 13 and 25-year longitudinal studies follow a group of pediatric patients in Lyndonville NY after an outbreak of MECFS. Noting that victims of outbreaks often have better long-term results, a promising 80% of patients reported "doing okay" and 20 out of 25 patients no longer carried a diagnosis of MECFS. However, these recovery statistics are very misleading according to Bells himself. Here is why...
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The reality
Of the 20 patients who no longer carried a diagnosis of ME it was found that 21 out of 23 outcomes still showed significantly more impairment than healthy controls. Half of the 80% of patients who said they were recovered (40% of the total) were not living normal lives. They had instead adapted their lives to be less strenuous, less stressful, and more energy conserving, with built-in rest periods between activities and appointments.
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Confusion about being well
While Dr. Bell is a strong supporter of the biological explanation of ME, he had this to say about the results of the study
For years I’ve been saying that people with CFIDS/ME aren't 'fruitcakes,’” he said. "But this is the one place where they actually are fruitcakes: They tend to be really confused about how sick they are."
Contrary to the popular false belief that ME patients are hypochondriacs, his research suggests that patients mistakingly believe in recovery when they are in reality still profoundly affected by the disease. He called this "health identity confusion."
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Leaving the healthcare system
Dr. Bell found that in patients who had moved away from his practice it was common to simply drop out of healthcare altogether stating:
"When I called them, I asked, 'Have you told your current doctor that you have this illness?' A lot of them said something like, 'I'm not going to subject myself to that!"
This may explain why doctors are so unacquainted with long-term MECFS patients (in combination with more severe patients being unable to access care at all).
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Examples of health identity confusion
Bell gave the example of a mother "who thinks staying at home is her choice. She seems to believe she's basically lazy, which she isn't. But by not trying to enter the workforce, she doesn't have to deal with a lot of issues, including the disability question."
Bell notes that some people simply denied the existence of their symptoms, or chose to think they were hypochondriacs, rather than acknowledging their illness.
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The good news
Despite not being well the group of patients who falsely believed they were recovered (40%) did have levels of activity only slightly lower than the healthy group. On average they spent about 13 hours upright per day as opposed to 15 for healthy controls and 1 to 5 hours for the patients still identifying as disabled. This indicates that these patients did have significant recovery.
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The bad news
Unfortunately, both patient groups who were not fully recovered experienced declining health over time. "The bottom line is that people who don't fully recover seem to be getting gradually worse, and that makes me nervous,” Bell reported.
This news is most depressing for severe patients where he stated "If someone's condition isn't improving after five years if things aren't changing, they're probably going to stay there... If they're really bad off then, their situation will likely become one of those nightmares we've all heard about."
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Notable observations:
Self-reporting is a very poor way to assess whether patients have fully recovered from MECFS.
Lifestyle changes and societal pressure moved people away from identifying as sick or disabled if at all possible.
While a good portion of people with ME will experience recovery the long term trend of those who do not make a full recovery is downwards
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On limitations
The largest limitation of this study is the special characteristics and small size of its sample.
All patients were pediatric at the onset.
The sample size was only 25.
All patients lived in the same small town and were subject to a single outbreak.
While qualitative data from this study is particularly interesting it should be noted that quantitative data conflicts with other studies in MECFS recovery. In particular, more recent studies have found only 1-5% of patients in the improving group while around 80% are relapsing-remitting and 15% declining. (Although Bells qualitative data suggests that relapsing-remitting patients may slowly decline over years)
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I found the recent presentation given by Dr. David Bell to the Massachusetts ME Society extremely interesting with regards to myth busting the common myth that ME patients believe they are more sick than they really are. Instead of suggesting that patients suffer from "health identity confusion" believing they have recovered even while still suffering symptoms.
While accepting our illness and limitations is important so is not denying that those limitations exist and are due to being sick not any sort of character flaw like laziness. This is the main observation I hoped to share with the chronic illness community as I found it to be a sad but great example of how ableism worms its way into our self-perception.
I decided to summarize the presentation notes here to make them accessible to more people.
It is worth noting that there were no treatments used in this group of patients that David Bell believed to make a substantial difference. In regards to lifestyle, he stated that "There are lots of people who eat terribly, don't exercise, and generally don't take care of themselves who get well anyway." Supporting the idea that diets and exercise routines have little effect on ME (besides negative effects from overexertion)
While this study did suffer from a small and non-uniform sample I find Dr. Bells qualitative observations extremely insightful, especially coming from a doctor who has followed this patient population for 25 years.
Please let me know if you would like to see more study summaries and takeaways in my slides and what you make of Dr. Bell's presentation. I am unable to make this sort of post regularly due to brain fog but find reading these studies fascinating.
https://www.massmecfs.org/more-resources-for-me-cfs/311-25-year-follow-up-in-chronic-fatigue-syndrome-rising-incapacity
