USA: Mount Sinai PACS clinic and Dr Putrino

Exactly. Not particularly optimistic about this group. But do appreciate their compassion.

 

Nailed it --- seems like bingo -- MAST cell activation* --- tick --- all of the wacky, unevidenced, ideas you can think of --- check them one at a time.
Still, I'm hoping this is just a word salad i.e. the actually do some sound research.

*
https://www.mountsinai.org/about/ne...on-for-the-clinical-care-of-long-lyme-disease

 

Twitter thread from Putrino explaining why they will not diagnose ME/CFS post-covid.

"provide care and conduct research for people with infection-associated complex chronic illness, starting with #LongCOVID, #MECFS, #EDS and chronic #Lyme hoping to include more conditions over time. However, in the course of providing services to folks with these conditions, 2/"

"care will be taken to NOT diagnosis them with other conditions just because they meet diagnostic criteria and for no other reason. For instance, people with #LongCOVID at our center will not receive an #MECFS diagnosis just because they meet international consensus criteria 3/"

"for an #MECFS diagnosis. Why? Because making this diagnosis does not change the assessment or treatment options open to our patients, but it DOES limit our patients’ opportunities to participate in clinical trials. We have many interventional trials that are active or pending 4/"

"that have an #MECFS arm, a chronic #Lyme arm or a #LongCOVID arm. However, people with multiple diagnoses can’t take part. The reason for this is because if we’re presenting these data to the FDA, they won’t accept data to support an indication for #LongCOVID if half the 5/"

"patients in the trial have an #MECFS diagnosis as well. So we need to keep them separate. Since adding a diagnosis doesn’t affect treatment, we don’t necessarily see the need to add a diagnosis. Let’s also think about the opposite direction: you have symptomatic chronic #lyme 6/"

"or #MECFS, you go through an acute SARS-CoV-2 infection and 6 months later you still have not returned to pre-infection baseline. Do you have #LongCOVID? Or has your pre-existing #MECFS or #lyme been worsened by a new acute infection? The honest answer is that we don’t yet 7/"

"know the answer to this. In this case, a #LongCOVID diagnosis may be helpful to you in the future to access specific treatments that may become labeled for #LongCOVID, but should you be included in the #LongCOVID arm of a clinical trial? Probably not (and def not according to 8/"

"the FDA). Also, “mixing and matching” diagnoses without a thoughtful rationale will also affect our ability to conduct good-quality EHR research in years to come. If everyone who meets ICC ME/CFS criteria is given that diagnosis, it will skew #LongCOVID data because not all 9/"

"centers will do this and things will get messy fast. I know this is a delicate topic and I don’t want this thread to be misinterpreted, so let me say how much gratitude I personally have for the #MECFS, chronic #Lyme, #Fibromyalgia, #dysautonomia and #EDS communities. Thanks 10/"

Thread continues at link above.

 

Amy Proal discussed this problem too. Personally I don't see why LC patients can't be diagnosed with ME/CFS (I've asked for both diagnoses to be recorded in my records). The symptoms and diagnostic criteria are the same (excluding lung fibrosis, PICS etc). Instead of swamping ME/CFS and replacing with a larger number of new LC patients, disappearing ME/CFS, politically it's stronger to say we now have many more ME/CFS patients - it's a major problem. No reason why studies can't simply look at different subgroups: pre-Covid, Covid-induced as Hutan says and Amy indicates at the end.

ME/CFS was the diagnosis patients got after SARS1 and that virus was similarly novel, with unique proteins interacting with ACE receptors etc. I don't think it's logical to say that LC is not ME/CFS, but maybe I'm just not seeing the bagpipes and kilt.

 

That's true in terms of published clinical guidelines, which are overly broad, particularly in the summary. They can expand to be a bit more helpful, eg CDC below. Though from a practical perspective, a doctor diagnosing LC (ME/CFS-like) could alternatively or cumulatively diagnose with ME/CFS.

CDC: Long COVID or Post-COVID Conditions

In the review papers, eg Long COVID: major findings, mechanisms and recommendations (2023, Nature Reviews Microbiology) —

Spoiler: Refs

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact (2021, Lancet: eClinicalMedicine)

Chronic Fatigue and Postexertional Malaise in People Living With Long COVID: An Observational Study (2022, Physical Therapy)

Endothelial dysfunction and altered endothelial biomarkers in patients with post-COVID-19 syndrome and chronic fatigue syndrome ME/CFS (2022, Journal of Translational Medicine)

A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity (2022, Nature Communications)

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS—A Systemic Review and Comparison of Clinical Presentation and Symptomatology (2021, Medicina)

 

Um I think I need the 3rd grade definition of this (from Wiki):

No true Scotsman, or appeal to purity, is an informal fallacy in which one attempts to protect their generalized statement from a falsifying counterexample by excluding the counterexample improperly.[1][2][3] Rather than abandoning the falsified universal generalization or providing evidence that would disqualify the falsifying counterexample, a slightly modified generalization is constructed ad-hoc to definitionally exclude the undesirable specific case and similar counterexamples by appeal to rhetoric.[4] This rhetoric takes the form of emotionally charged but nonsubstantive purity platitudes such as "true", "pure", "genuine", "authentic", "real", etc.[2][5]

 

Anecdotally, this kind of attitude towards an ME/CFS diagnosis is quite common in the UK, and is part of why DecodeME has struggled to recruit more post-Covid ME/CFS patients than we have. I suspect that a large part of it comes from the clinician knowing the stigma around the ME/CFS diagnosis - we can give them the same care without inflicting that on them - but obviously they then contribute to the stigma themselves with that attitude.

 

Frustrating. I have a close family member in the UK (newly on our forum) also with LC, who could otherwise have qualified for DecodeME. We also share an ME/CFS-affected ancestor from 100 years ago. It would have been ideal to have our family's genes represented in the study. I have to assume that evidence of vulnerability in our family tree across time (as opposed to any shared viral or environmental factors) could only have strengthened the chance of meaningful data.

 

More 'clarification' from Putrino

An MD, Azola Alba, replying to him
"I disagree with withholding a diagnosis of ME from a LC patient. There is clear diagnostic criteria established and we should be building on the decades of work and not reinventing the wheel. Not all Long COVID patients meet MECFS criteria, but those who do need to be identified."

Putrino
"Not withholding! Just not blanket diagnosing!"

Alba
"So MECFS is a blanket dx but LC is not a blanket dx ? Lumping all pw LC in studies without clinically phenotyping them will continue to muddy the science. My clinical lens may be skewing my view. I leave the science to you. I guess we can agree to disagree(;"

Putrino
"Not what I am saying. Happy to have a conversation since my words here aren’t cutting it. You have my email!"

I'm not sure I am any the wiser about how his approach is a good one.

 

https://twitter.com/user/status/1723923872234319951


Tuller: “Another insightful thread from @PutrinoLab.”


Barron: He's saying he won't diagnose people with POTS, MECFS, etc. because he doesn't think it affects research or treatment. How is that insightful? You want study results that don't provide details on how patients present?

 

https://twitter.com/user/status/1724024460867494300

 

It's an attempt by Putrino to explain himself further. This seems to be the core of his argument

"The intention of this tweet was not to suggest that we would WITHHOLD a diagnosis from anyone, rather to say that we will not be automatically diagnosing everyone with #LongCovid who meets #MECFS diagnostic criteria with ME/CFS. If a patient"

"meets diagnostic criteria and the diagnosis serves them in some way (decided by an open discussion with their clinician), they get that diagnosis. I also want to clarify that this discussion ONLY applies to syndromic diagnoses: i.e. diagnoses that we make by checking off lists"

"of symptoms. This does not apply to diagnoses such as dysautonomia, diabetes, etc where we use clinical data to make the diagnosis. The reason the conversation matters for syndromic diagnoses is because with the right checklist you can diagnose anything. My original thread was"

thread continues

Personally, I am underwhelmed with the logic.

 

Not sure why Lyme is in the mix then. Well, chronic Lyme as they are referring to it. A good portion of whomever they see with a history of Lyme will still clinically present as Lyme, e.g, CDC-positive Bb IgG's.

But, eh, it's nice to be included.

 

https://twitter.com/user/status/1724061062008377694


Unfortunately this thread relies on an unscientific and potentially biased view of what constitutes “syndromic” illness, putting them in a category of less value than illnesses with more clearly recognized markers.


……..
“It’s bias and bigotry. He’s an exercise/rehab doc. What should we expect??”

 

There's some legitimate concern with leaving people with multiple diagnoses and how healthcare professionals perceive them (and I guess with having any such diagnosis at all, and how some HCPs badly react to them). But I think on the whole the benefits outweigh those concerns. The issues are clearly with how those illnesses have been poorly defined, and the way forward is to fix those problems, not tiptoe around them.

So it's more about protecting patients from the screw-ups of medicine than anything else. And it's not as it fixing medicine will be easy or happen soon, so you can understand the reasoning here. But I think that making the problem more visible is the fastest way to force change.

It's not as if the behavior of the quacks pushing psychosomatic ideology will change, they will keep doing what they do no matter what. Or as if the bad attitudes towards the illness change significantly whether the diagnosis is applied at all.