This post has been added and a series of posts moved from the Long Covid in the media thread. Causes of Death Among Patients With Chronic Fatigue Syndrome Leonard A. Jason et al. https://www.tandfonline.com/doi/abs/10.1080/07399330600803766 Abstract Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed. ________________________ This paper was quoted in a 2009 paper: Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS Michael Maes 1, Frank Nm Twisk https://pubmed.ncbi.nlm.nih.gov/20038921/ Abstract There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Important precipitating and perpetuating factors for ME/CFS are (amongst others) bacterial and viral infections; bacterial translocation due to an increased gut permeability; and psychological stress. Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder. This review demonstrates that disorders in various IO&NS pathways provide explanations for the earlier mortality due to cardiovascular disorders in ME/CFS. These pathways are: a) chronic low grade inflammation with extended production of nuclear factor kappa B and COX-2 and increased levels of tumour necrosis factor alpha; b) increased O&NS with increased peroxide levels, and phospholipid oxidation including oxidative damage to phosphatidylinositol; c) decreased levels of specific antioxidants, i.e. coenzyme Q10, zinc and dehydroepiandrosterone-sulphate; d) bacterial translocation as a result of leaky gut; e) decreased omega-3 polyunsatutared fatty acids (PUFAs), and increased omega-6 PUFA and saturated fatty acid levels; and f) the presence of viral and bacterial infections and psychological stressors. The mechanisms whereby each of these factors may contribute towards cardio-vascular disorder in ME/CFS are discussed. ME/CFS is a multisystemic metabolic-inflammatory disorder. The aberrations in IO&NS pathways may increase the risk for cardiovascular disorders. ____________________ The claim that "ME/CFS patients were dying from heart failure 25 years earlier than those without ME/CFS" was treated as fact by Dr Claire Taylor in a series of tweets quoted and discussed on the Long Covid in the media thread. That discussion has been moved to this separate thread.
Copied post Some waking up . It could have been so different.... https://twitter.com/user/status/1626397450628915201
Moved posts Yikes. If only doctors had listened to PwME's symptoms, there might have been a treatment for PEM that allows PwME to resume their normal activities, and we wouldn't face the health burdens of extreme inactivity.
There is also a possibility that the cardiovascular issues faced by people with ME are a direct result of the underlying condition, rather than indirectly a consequence of deconditioning. On autopsy people with severe ME have been observed to have shrunken hearts, but we have no idea if this is directly related to the ME or indirectly the result of inactivity. Further we have no idea, if it was possible to treat the ME, whether this would be reversible.
Important not to re-write history on the basis of Chinese Whispers - the figures on ME/CFS mortality come from a 2006 paper: Causes of Death Among Patients With Chronic Fatigue Syndrome full paper at SciHub https://sci-hub.st/10.1080/07399330600803766 Discussion here:https://www.s4me.info/threads/risk-...22-elliott-and-jason.29994/page-2#post-458780 Jason, Corradi, Gress, Williams & Torres-Harding https://sci-hub.st/10.1080/07399330600803766 which uses National CFIDS Foundation Memorial List a cohort of just 144 deaths. "Table 1 presents the reason for death among the 144 individuals where this information was available. The three leading causes of death were heart failure, suicide, and cancer, accounting for 59.6% of cases. In regard to gender, 74.4% of this sample were female and 25.6% were male, and this difference was significant at the p < .01 level using a binomial test. There were also significant differences between males and females at the p < .01 level for deaths due to suicide and cancer. Small sample sizes probably led to lack of significance on other variables." We can all wish that more research had been done earlier, but we shouldn't understate the difficulties of getting to grips with a condition (or conditions) as amorphous as ME/CFS. We can rightly complain about the paucity of data collection over the last 30 years, but we can't know that even if we knew much more about the morbidity and mortality of the global patient population whether that would have led to scientific insight into causation or the development of effective treatment and/or cures.
The mean age of ME/CFS patients dying from heart failure, 58.7 years, was significantly lower than the age of those dying from heart failure in the general US population, 83.1 years I wonder if this corrects for the fact that very few people over 65 appear to admit to having ME/CFS for whatever reason. I strongly suspect that the cohort studied was not representative of all ages. Maybe people over 60 with ME simply didn't get enrolled.
The 'cohort' is just 144 deaths reported by family members to the National CFIDS Foundation Memorial List there was no 'correction' - Jason et al simply sorted the deaths into categories.
Then that's useless. I've seen people attempting to argue that being gay was unhealthy based on obituaries from the gay community. This approach is fundamentally flawed because it only counts the dying, a sort of reverse survivorship bias if you will.
This is why selective quotes from single studies always need context and caution. Jason et al didn't make grand claims for their 2006 paper, they were explicit about the data source and the limitations of their study as their final summary paragraphs demonstrate: "There are a number of methodological limitations in the present study. First, there was no independent confirmation of cause of death, and self report data might have been inaccurate. It was not possible to interview the family members or seek independent confirmation of cause of death. In addition, data available from the memorial list often was not complete. Even when a cause of death was provided, more specific information was frequently missing (e.g., what type of heart failure or cancer caused the death). It also was unclear how representative the memorial list is and from what population it draws its data. Clearly, it is not possible to generalize the data from this memorial list to the overall population of patients with CFS. We cannot underestimate this methodological flaw to the present study. In other words, it is possible that some of the deaths were either misdiagnosed or that the individuals did not even have CFS. We would urge future investigators on this topic to place more attention on the diagnostic criteria. Clearly, a study on causes of death related to a condition that may have been unreliably diagnosed is a serious issue. There are so few published findings in this area, however, that the current study could at minimum serve to stimulate additional, better controlled studies. In spite of the above limitations, among this sample of participants with CFS, causes of death appear to cluster in three general domains: heart failure, suicide, and cancer. For each of these areas, there is supportive evidence that might help explain why heart failure, cancer, and suicide might be associated with deaths among people with CFS in this sample. Longitudinal prospective studies with community-based samples are needed in order to better understand the unique health risks associated with having CFS." This 2006 paper was picking up on some 'suggestions' ("other investigators have found cardiac and immunological dysfunction in patients with CFS (Evengard, Schacterle, & Komaroff, 1999; Lerner et al., 2003; Peckerman et al., 2003") that cardiac issues may be involved in ME/CFS (or misdiagnosed as !?) and used the Memorial list to explore that. In the following 16 years the cardiac connection hasn't come to the fore, which is an important context that should be mentioned when anyone refers to Jason et al's findings, but the findings are what they are, they may have or have had an indicative value, which may or may not still have relevance.
My best friend passed away at the age of 53 (male) from ME/CFS complications. It was due to heart failure. He had a appointment to see a cardiologist that week.
Could refusing care be a factor in life expectancy? Many PwME have very poor quality of life and thus may let nature take its course when they get a life-threatening condition.
Theoretically possible. What I would say might happen more often is they and/or their medical team may get delayed in getting/making some diagnoses because of all the existing symptoms and impairments. Also the patient may have had negative experiences of the medical system or find it difficult to access (e.g. due to a lack of spare energy and/or money). Also prejudice against patients might lead to fewer tests being requested by medical teams.
That would be a reasonable thing for epidemiologists to look out for but as things are we simply have no way of knowing. Just taking the US alone there are around 3.5 million deaths a year, which at a prevalence rate of 0.25% (which seems an accepted ball park figure) for ME/CFS suggests that there are approaching 9,000 deaths of ME/CFS patients a year, about who we know almost nothing.
Absolutely agreed on all points you mentioned. The complicated nature of ME and LC confuses both patients and doctors. How to convey the symptoms, how to sort out the symptoms, how, and what to investigate. On the other hand, the medical attitude may be quite negative about these patients, which simplifies the whole effort regarding testing and treatment. The multiple symptoms in these disease are still unfortunately seen as fantasy by many including medical practitioners. Both patients and physicians may develop consult fatigue. ETA: Added LC and the word "patients"
