Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS, 2022, Moslehi et al

[SNT Gatchaman]

Ulcerative colitis is probably not in fact an autoimmune disease but rather an auto inflammatory disease, although things are complicated.

Further to this, the following thread was tweeted by Dr Gurdasani (clinical epidemiologist and beacon of wisdom in the Covid/Long Covid space). Here she describes her experience of UC.

I don't think this is going off-topic. My question would be: do we think UC is a potential co-morbid disease to ME, with a common predisposition (autoimmune or as Jo clarifies above autoinflammatory); or is UC actually more commonly associated with ME, but ME isn't diagnosed as such, as ME symptoms are put down to the known UC with its clear history and established biomarkers?

Selected quotes from the thread —

The fatigue correlates very well with flare-ups of disease- so it is related to chronic inflammation. When my flare is controlled, the fatigue improves. But it takes months- years to get back to 'normal' after a flare. It's one of the last symptoms to improve.

Sitting on a chair or desk can lead to severe post-exertion malaise (yes, sitting becomes exertion!). Unfortunately, this symptom, while at the heart of my poor quality of life is the one that doctors don't know how to treat, & is generally not the focus of UC research.

The first thing I thought after my exchange with my specialist was that if I was getting recommended psychological therapies for fatigue for what is a well known auto-immune condition - what hope did someone with long COVID/ME/CFS have - where the aetiology is far less clear?

But why don't we focus on lingering symptoms, or symptoms for which we don't know the cause? After all, they massively impact patients. Why don't we research the causes of lingering fatigue in auto-immune/chronic inflammatory disease & look at how we can improve quality of life?

We're learning so much from patients with ME/CFS/Long COVID. Let's not waste these lessons. While I don't think I have ME/CFS/Long COVID, listening to descriptions of PEM helped me understand my own fatigue - of which PEM was a big feature. Much of what I learned about managing it was from the disabled/ME/CFS/Long COVID community, not from my treating team.

We need to transfer this experience to clinicians and researchers. And take this further in patient co-led research to really understand underlying mechanisms, so we can treat them. But first, we need to acknowledge we don't have the answers, believe patients, and really listen.

 

[Jonathan Edwards]

I think UC has symptoms that sound very like ME, but the key thing about the cycles of symptoms in ME is that they do not seem to relate to any identifiable inflammatory disease.

Although feeling fatigued after sitting on a chair with UC might be post-exertional and a similar malaise to ME I think there is more to the concept of PEM than that.

We come back to the fact that lists of symptoms are not what diagnoses are based on. Diagnoses are based on careful analysis of the temporal course and detail of symptoms in the context of known aggravating or relieving factors.

I am not sure we have any reason to think UC and ME are connected other than by chance?

 

[chillier]

I think UC has symptoms that sound very like ME, but the key thing about the cycles of symptoms in ME is that they do not seem to relate to any identifiable inflammatory disease.

Although feeling fatigued after sitting on a chair with UC might be post-exertional and a similar malaise to ME I think there is more to the concept of PEM than that.

We come back to the fact that lists of symptoms are not what diagnoses are based on. Diagnoses are based on careful analysis of the temporal course and detail of symptoms in the context of known aggravating or relieving factors.

I am not sure we have any reason to think UC and ME are connected other than by chance?

Do you think the female to male sex bias seen in both ME and the majority of autoimmune diseases is suggestive of autoimmune involvement in ME?

As for PEM I'd love to hear if there have been any studies looking at how it manifests in different people. As it stands I don't feel satisfied there is a consensus about how this symptom really manifests. I've heard people describe a clear relationship between an overexertion, a delay, and a deterioration. For others like myself - how i feel in 6 months seems to depend on an aggregate of how much i exert myself on many occasions up to that point. Her description of UC post exertion feels more relatable in my case than the 24-48 delay type.

 

[LarsSG]

A few people in that Twitter thread talking about being misdiagnosed with ME and then later receiving a diagnosis of lupus or Sjogren's, which makes me wonder how common that may be. If you had a significant number of people who had an autoimmune disease misdiagnosed as ME, then maybe the high rates of autoimmune disease in relatives of those with ME could be explained by some of the people with ME actually having an autoimmune disease (and thus perhaps being more likely to have relatives with an autoimmune disease). It would be interesting to know which autoimmune diseases this study found in relatives.

 

[Jonathan Edwards]

Do you think the female to male sex bias seen in both ME and the majority of autoimmune diseases is suggestive of autoimmune involvement in ME?

Not particularly, the pattern of incidence with age is not similar to autoimmune disease in general.
Some autoimmune diseases have odd age incidence profiles like lupus and MS but even there the pattern is different. The data for ME may be biased but that is taking it at face value.

 

[Jonathan Edwards]

A few people in that Twitter thread talking about being misdiagnosed with ME and then later receiving a diagnosis of lupus or Sjogren's,

It is likely that a small proportion of people diagnosed with ME in fact have an autoimmune disease. But equally, people often get given diagnoses like Sjögren's syndrome on very dubious grounds by overenthusiastic rheumatologists.

The main issue for a study like this for me is that associations looked for in clinic cohorts or internet cohorts are very likely to be biased towards the positive. The only real way to get a meaningful answer is to have a population based cohort.

 

[Sly Saint]

article
COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

ALBANY, N.Y. (July 25, 2022) - UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19.

According to the CDC, 1 in thirteen adults in the U.S. have COVID-19 symptoms lasting three or more months after contracting the virus—a condition often referred to as “long COVID.” However, research suggests that long COVID is complex, and in some instances may not be COVID-19 at all, but rather ME/CFS—triggered by COVID-19.

ME/CFS is a complex disabling disorder with no known treatment. Between 25 and 50 percent of those with the illness are bed or housebound for extended periods of time, with overwhelming fatigue that does not diminish after resting and difficulty performing daily tasks. Prior to the COVID-19 pandemic, it was estimated that up to 3.4 million people in the US suffered from the illness—the range is large due to the difficulty in diagnosing the disease as it is often dismissed or assumed to be another disorder.

Since ME/CFS is believed to be triggered by the onset of an infectious illness, research suggests that COVID-19 may be a trigger for ME/CFS. The chronic long-haul COVID-19 symptoms that some people report as following the resolution of their acute illness have similarities to symptoms of ME/CFS, such as persistent fatigue, sleep dysfunction, cognitive impairment, impaired memory, and more.

“It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world,” Moslehi explains. “This makes it urgent to identify risk factors and underlying biologic mechanisms for this condition along with its potential connection to COVID-19.”

https://www.albany.edu/sph/news/202...gic-encephalomyelitischronic-fatigue-syndrome

 

[Saz94]

Yes, this does not look to me to use reliable enough methodology to want to put much weight on it. A decent population based study with very good checking of data is needed.
There may be correlations and they may be important but we all have relatives with diseases.
Ulcerative colitis is probably not in fact an autoimmune disease but rather an auto inflammatory disease, although things are complicated.

The odd thing here is that although they found increased rates of both immune disease and cancer they say this suggests an immune cause for ME. But why not a neoplastic cause? The logic seems a bit woolly. There are links between autoimmunity and cancers but they are very very specific like the relation between PBC and liver tumours or RA and certain types of lymphoma. To show something that really looks to be relevant you need much more careful investigation I think.

I agree.

The p-values are good here, but the small sample size makes me concerned about reliability.

 

[TrixieStix]

A few people in that Twitter thread talking about being misdiagnosed with ME and then later receiving a diagnosis of lupus or Sjogren's, which makes me wonder how common that may be. If you had a significant number of people who had an autoimmune disease misdiagnosed as ME, then maybe the high rates of autoimmune disease in relatives of those with ME could be explained by some of the people with ME actually having an autoimmune disease (and thus perhaps being more likely to have relatives with an autoimmune disease). It would be interesting to know which autoimmune diseases this study found in relatives.

This is my experience. I had severe symptoms for 4 years (including severe PEM at times) that were eventually diagnosed as ME/CFS after tons of other stuff was ruled out. I had SO MANY blood tests, scans, etc. But finally after 4 years I developed new symptoms that were unique and specific to a very rare autoimmune disease called Relapsing Polychondritis. There is no biomarker for this condition so until I developed the hallmark symptoms there was no way to know I had it. I was also diagnosed with the UCTD (also no biomarker for this AI disease) at the same time. Starting on daily Prednisone, Hydroxychloroquine and Leflunomide was life changing for me. I am still affected enough that I continue to not be able to work but my quality of life and functionality is MUCH improved from where it was before.