Preprint Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

Patient-Reported Treatment Outcomes in ME/CFS and Long COVID
Martha Eckey; Peng Li; Braxton Morrison; Ronald W Davis; wenzhong xiao

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID are persistent multi-system illnesses affecting many patients. With no known effective FDA-approved treatments for either condition, patient-reported outcomes of treatments are invaluable for guiding management strategies in patient care and generating new avenues for research. Here, we present the results of an ME/CFS and Long COVID treatment survey with responses from 3,925 patients.

We assessed the experiences of these patients with more than 150 treatments, as well as their demographics, symptoms, and comorbidities. Patients with each condition who participated in the study shared similar symptom profiles, including all the core symptoms of ME/CFS, e.g., 89.7% of ME/CFS and 79.4% of Long COVID reported post-exertional malaise (PEM). Treatments with the greatest perceived benefits were identified, which had varied effects on different core symptoms. In addition, treatment responses were significantly correlated (R2 = 0.68) between the two patient groups. Patient subgroups with distinct profiles of symptoms and comorbidities showed varied responses to treatments, e.g., a POTS-dominant cluster benefiting from autonomic modulators and a cognitive-dysfunction cluster from CNS stimulants.

This study underscores the symptomatic and therapeutic similarities between ME/CFS and Long COVID and highlights the commonalities and nuanced complexities of infection-associated chronic diseases and related conditions. Insights from patient-reported experiences, in the absence of approved treatments, provide urgently needed real-world evidence for targeted therapies in patient care and for developing future clinical trials.

(Disclaimer: The findings presented in this paper are based on patient-reported information and are intended for research purposes only. They should not be interpreted as medical advice. Patients are advised to consult their healthcare provider before initiating or altering any treatment.)


Link | PDF (Preprint: MedRxiv) [Open Access]

 

Agree that's probably the only useful data (299 responses). I'm assuming that those doing GET were expecting improvements as primed by their medical team, so that bias with PROs should have been in the opposite direction.

 

Looking at the raw results for GET from the supplementary data for the ME/CFS group (total 263): much worse 151, moderately worse 50, slightly worse 19, unchanged/unsure 21, slightly better 11, moderately better 8, much better 3.

So 83.65% of ME/CFS patients reported that they felt worse? Might be useful for advocacy in addition to the survey data that we already have...

 

"Most Troubling Symptoms"

From:
"Patient-Reported Treatment Outcomes in ME/CFS and Long COVID"
https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.supplementary-material

 

I wouldn't be too sure about that. From what I understand the survey was largely shared amongst "Twitter friends" so presumably people who often have a similar opinion as you and I think quite a few in that sphere would have known about the history of ME/CFS and GET. Since quite a few countries enforce GET amongst patients, independently of what they think of it, I'm not sure the bias would definitely have to go in that direction. From what I understand you could even see provisionary data of other responders (at least I remember this Twitter account posting data whilst the survey was still ongoing) possibly introducing further bias.

GET enthusiast will probably also be quick to claim that not all types of GET are the same or that there is no confirmation that these people were enrolled in GET or that there is no validation whether GET was followed correctly, or something of that sort, whatever they may mean with that.

I think this may more be a case of GIGO which makes any conclusions hard to draw. I think the only place where this is useful is when Garner comes up with his n=1 patient experience when you have a n=300 patient experience, of similar quality, saying the opposite.

 

Precisely, which is why I think there is no need to use this survey for those purposes.

 

Interesting how high PEM is, and how low loss of sense of smell is.

It really shows how perceptions of long COVID are not formed by patients experiences but by what the medical field took seriously, ie. loss of taste and smell, while completely ignoring PEM.

 

Might be a function of how less common it is? And generally more self-limited?

I lost my sense of smell almost completely back in August when I had COVID for the first time and I'm really glad it returned because it was pretty bad to have to eat while food tastes like cardboard, but obviously on its own it would not stop me from doing 99% of things that a normal life demands.

But obviously it's much more noticeable to MDs, and far easier to validate, so it gets outsized importance because their gradation of importance is more about how valid it is to them and relevance to differential diagnostic, than how it affects, let alone limits, people.

 

Found it quite interesting that ME/CFS and Long Covid patients rated treatments very similarly (although Long Covid patients were a bit more positive about the treatments throughout, hence why the bubbles are slightly above the line).

 

Also had a look at treatments that received more than 20% negatives response and had more than 100 respondents. It's quite remarkable how much worse GET is viewed compared to strong medications with notable side-effects such as Abilify, antidepressants such as Amitriptyline, SSRIs, and Trazodone and Gabapentin.

 

Since long COVID patients are more likely to naturally recover, I guess they are more likely to attribute that to whatever they were taking at the time.

 

Here are the top treatments sorted by percent of people with ME/CFS who reported they were "much better":


And long COVID:

 

Yeah, oral fluids/electrolytes is pretty high too if looking at moderately improved. 23% of ME/CFS either moderately or much improved. It also has the highest number of people who answered out of the 181 treatments.

 

I would guess that OI is the most “treatable” part of ME/LC