Our Evolving Understanding of ME/CFS Abstract The potential benefits of the scientific insights gleaned from years of treating ME/CFS for the emerging symptoms of COVID-19, and in particular Longhaul- or Longhauler-COVID-19 are discussed in this opinion article. Longhaul COVID-19 is the current name being given to the long-term sequelae (symptoms lasting beyond 6 weeks) of SARS-CoV-2 infection. Multiple case definitions for ME/CFS exist, but post-exertional malaise (PEM) is currently emerging as the ‘hallmark’ symptom. The inability to identify a unique trigger of ME/CFS, as well as the inability to identify a specific, diagnostic laboratory test, led many physicians to conclude that the illness was psychosomatic or non-existent. However, recent research in the US and the UK, championed by patient organizations and their use of the internet and social media, suggest underlying pathophysiologies, e.g., oxidative stress and mitochondrial dysfunction. The similarity and overlap of ME/CFS and Longhaul COVID-19 symptoms suggest to us similar pathological processes. We put forward a unifying hypothesis that explains the precipitating events such as viral triggers and other documented exposures: For their overlap in symptoms, ME/CFS and Longhaul COVID-19 should be described as Post Active Phase of Infection Syndromes (PAPIS). We further propose that the underlying biochemical pathways and pathophysiological processes of similar symptoms are similar regardless of the initiating trigger. Exploration of the biochemical pathways and pathophysiological processes should yield effective therapies for these conditions and others that may exhibit these symptoms. ME/CFS patients have suffered far too long. Longhaul COVD-19 patients should not be subject to a similar fate. We caution that failure to meet the now combined challenges of ME/CFS and Longhaul COVID-19 will impose serious socioeconomic as well as clinical consequences for patients, the families of patients, and society as a whole. Open access here Bolding mine. PAPIS, seriously? link updated
I know... papis... how do we pronounce that, pa-piss? Pa-pee? I can already imagine the doctors laughing and laughing about the introduction of a new name. It still doesn’t change anything and the acronym is not going to help further. Edit to add: this would make it even more difficult to have a homogenous cohort, considering the organ related problems that Covid patients seem to have.
The article is well-meant, even good in places. But I can't make sense of this. They seem to be suggesting that their unifying hypothesis is 'viruses (an acute infection or a reactivation of viruses) causing ME/CFS symptoms'. As hypotheses go, it's, well, pretty vague and limited. What about post-Q fever (which is ME/CFS following a bacterial infection)? What about toxic exposure (a trigger they note might cause ME/CFS?). Are they suggesting EDS causes viral reactivations? As for PAPIS - Post Active Phase of Infection Syndromes. The name is too broad. There are quite a number of conditions that happen after the active phase of infections - e.g. post-polio and Guillain Barre syndrome. Not all of them look like ME/CFS.
It is unfortunate to suggest a renaming of the disease in a paper and decide that Long-Covid patients gets a 3rd name for their disease after PASC announced last week at the NIH. History has not been good for us and i would suggest that perhaps patients should be involved in the decision to rename. SEID has not taken. Patients opposed but they were not asked either. There are aspects of this paper that is bound be valuable including the socio-economical impact of a large number of patients getting off the workforce due to COVID, but all i can take for now is that new name. Edit to add: i also note that the authors are downgrading from ‘disease’ to ‘syndrome’. EEEK.
Yes but, a disease usually has a defined or understood cause, process, and treatment. So we are still stuck with syndrome until a biomarker is found.
I have to re-listen to this webinar. But it was interesting what Dr. Friedman said about his daughter's experience with EBV. That it would flare up. That makes me wonder if it bubbles along at a lower level creating problems in a number of pwME. I also noted Dr. Friedman talked about damage from long term EBV infection. I don't know if anyone has done a study on this since it was dismissed as a cause by a NIH researcher decades ago. ETA:OK, I found this study, with the abstract in the next posting below: https://pubmed.ncbi.nlm.nih.gov/32129496/
J Med Virol. 2020 Mar 4;92(12):3682-3688. doi: 10.1002/jmv.25744. Online ahead of print. Cytomegalovirus, Epstein-Barr virus, and human herpesvirus-6 infections in patients with myalgic еncephalomyelitis/chronic fatigue syndrome Evelina Shikova et al Abstract [...] In conclusion, this study using both serological and PCR-based techniques for distinguishing between active and latent infection showed high rate of active EBV infection among patients with ME/CFS indicating that at least in a subset of cases, EBV is important factor for the development of disease. (my bolding) See this thread: https://www.s4me.info/threads/cytomegalovirus-epstein‐barr-virus-and-human-herpesvirus-6-infections-in-patients-with-me-cfs-2020-shikova-et-al.13918/
The OP link to the paper doesn't work for me. But this one does: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7996879/ The link has been fixed. Note also the talk about this paper discussed here, it may help understand the paper better (or not, have not read the paper and only listened to part of the talk which seems reasonably sensible though not groundbreaking): https://www.s4me.info/threads/ptot-4-mecfs-may-2021-webinar-with-dr-kenneth-j-friedman.20715/ now merged Based on the talk we'll be hearing more about PAPIS. Friedman says he's just been given the go ahead to establish a "topical collection" on PAPIS in the journal Healthcare.
I have just started watching the video. Friedmann and 3 others have got together to write a paper about PAPIS which is published in an edition of the journal Medicina about ME/CFS that is posted about on this thread: Medicina: Special Issue "ME/CFS: Causes, Clinical Features and Diagnosis" Deadline Dec 2020 At 11 minutes on the video, Dr Friedman is talking about this special issue and gives on the screen the link to our thread here on S4ME, and says it's the website for the special issue. I assume that's a mistake?
The first half hour of the talk is focused on the similarities between ME/CFS and long Covid. Treatment starts at about 36 minutes. - Pacing, breaking up activities with rests - activity logs, and step and heart rate monitoring to help patient identify links between activity and symptoms - treat comorbid conditions - ask patients which symptom they want tackled first - treat one symptom at a time. - he says some patients report pain relief with a list of alt med - acupuncture, chiropractic, pilates, massage but no formal studies. He suggests they are worth a try - there's a high degree of variability in responses to symptomatic treatments. From 43 minutes his proposal for research on treatment of people with ME/CFS and long Covid by physical therapists and occupational therapists. He suggests try the therapies used for ME/CFS on long Covid patients, and publish the results under the umbrella of PAPIS. He says the journal Healthcare, which published the topical collection on severe ME/CFS that he edited, have now agreed to him editing a collection of papers by physical therapists and occupational therapists on PAPIS, his umbrella term for post active infection syndromes. (49 minutes) The presentation finishes at about 51 minutes, then there is discussion/questions which I haven't watched.
While I appreciate the big commitment Dr Friedman has made to ME/CFS and the sacrifices, I despair that someone who has been involved over such a long period of time in shaping how medical professionals see ME/CFS can still be coming out with that: He says they are 'certainly worth a try'. There's no reason to think that acupuncture or chiropractic can do anything. Suggesting they can help just makes ME/CFS sound like an imaginary illness. I can't see how pilates is going to help with ME/CFS pain. It might help with back pain, but that's a completely different issue. And of course the impact of the activity on the ME/CFS illness has to be weighed against any benefit for other conditions. Personally, pilates and massage both made me more ill.
I heartily agree, @Hutan. Pilates made me more ill too, and acupuncture made no difference, not that I tried it for long. The acupuncturist stuck one needle in my back, and I almost went through the roof with pain and she had to stop.
That the 90% natural recovery rate has no yet been noticed and how it would obviously impact improvement/recovery attribution is seriously demoralizing. That's the stuff of witch doctors, it's just not defensible at this point to continue being completely oblivious to this important fact. There is a serious problem with learning from experience in medicine, it's just not happening. If it's not textbook it can't exist, everything is framed according to current knowledge, as if the explicit assumption is that everything there is to know is already known, it's just a matter of fitting everything in those boxes.
I had a big intake of breath when I got to that slide, thinking here we go... But, to be fair, while he's talking about these treatments as worth a try, he also points out that they are things reported by patients to be helpful but that there is no research evidence for them. And then encourages the webinar attendees - PTs and OTs - to consider producing such evidence, and to publish the findings, whether positive or negative. I suspect he meant, though he failed to say so, "worth a try" in the context of milder cases because later in the Q&A he suggests that for severe patients something like passive stretching would be more appropriate. Again he stresses the need for more research. This theme of inspiring more research may be what's really driving the whole PAPIS thing. Reading between the lines I sense a strategy behind the webinar and the hypothesis paper. It seems to go something like this: PAPIS = Post Active Phase of Infection Syndromes - note the plural - is meant as an umbrella term for ME/CFS, Long Covid and other post-viral syndromes, not as a replacement term for ME/CFS. Syndromes falling under PAPIS are not necessarily the exact same but they're similar enough that it makes sense to study them together. Apart from significant symptom overlap a key common element is that all PAPIS are considered post-infectious even in cases where no infectious onset has been identified; those are still considered post-infectious by the route of non-infectious stressors reactivating latent pathogens. Individual PAPIS syndromes have to date been largely ignored by research, partly due to lack of numbers and partly due to the lack of a single responsible pathogen and the resulting ease with which they could be written off as psychosomatic. Adding all the PAPIS together, especially with the high numbers of clearly viral-onset LC, makes them harder to ignore. Therefore, by pushing the concept of PAPIS as a BIG post-infectious problem we're more likely to see significant biomedical research effort directed at post-infectious illness, and that research will benefit all the syndromes falling under PAPIS. That's my interpretation of Friedman's intentions here anyway. If I'm right I wish him success (besides, the BPS folks seem to have success with their acronyms, maybe because they're catchier for politicians and funders to remember, so why shouldn't the proponents of a biomedical approach try a few? ). A key paragraph from the hypothesis paper presented in the webinar: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7996879/
