NYC-based ME/CFS doctors recs? (excluding Susan Levine)

N

nwbh

New Member
Hello wonderful community,

I'm an NYC resident who's been absolutely struggling with severe ME/CFS for years - the unrelenting fatigue, brain fog, and crashes have me at my wits' end. I've seen so many unhelpful doctors and feel so lost.

Could anyone please kindly share recommendations for NYC-based ME/CFS specialists who understand integrative care (excluding Dr. Susan Levine - she's not accepting new patienst)? Or a PCP? At this point, it doesn't matter if they don't take any insurance. It's been impossible to find even a PCP who believes in ME/CFS. I'd be beyond grateful for any tips and advices.

Thank you all so much from the bottom of my heart - your help would truly change my life.

Warmest thanks,
 
I’m not sure you want integrative care—that usually veers into pseudoscience.



Maybe Scoma is taking new patients. He occasionally gives cyclophosphamide to patients.

michaelrscomamd.com

Infectious disease physician NYC | Michael R. Scoma, Medical PC

Michael R. Scoma, M.D – best infectious disease doctor NYC. Receive personalized care from a board‑certified infectious disease practitioner.
michaelrscomamd.com michaelrscomamd.com
 
Jaybee00 said:
I’m not sure you want integrative care—that usually veers into pseudoscience.



Maybe Scoma is taking new patients. He occasionally gives cyclophosphamide to patients.

michaelrscomamd.com

Infectious disease physician NYC | Michael R. Scoma, Medical PC

Michael R. Scoma, M.D – best infectious disease doctor NYC. Receive personalized care from a board‑certified infectious disease practitioner.
michaelrscomamd.com michaelrscomamd.com
Click to expand...
Thanks for your correction. I think I was using the word rather naively.

I was looking into Dr. Scoma but actually saw he had a bad reputation in this forum. Given he charges $900 per visit, I was hesitant based on people's opinion about him here.
 
nwbh said:
Could anyone please kindly share recommendations for NYC-based ME/CFS specialists who understand integrative care (excluding Dr. Susan Levine - she's not accepting new patienst)? Or a PCP? At this point, it doesn't matter if they don't take any insurance. It's been impossible to find even a PCP who believes in ME/CFS. I'd be beyond grateful for any tips and advices.
Click to expand...
It really depends on what you are looking for - if you want a ME/CFS "specialist," you are going to be looking at people who many on this forum view critically (to say the least). Generally speaking - at least in my reading of the forum -, because ME/CFS is not understood, anyone who specializes in its care is assumed to be a grifter or someone sufficiently misguided as to be untrustworthy. For many here, including some of the loudest voices, all of the "treatments" that have become standard for ME/CFS and LC clinics and "specialists" (LDN, LDA, mestinon, fludrocortisone, etc.) should absolutely not be prescribed in the absence of properly blinded RCTs (which, frustratingly, seem unlikely to ever arrive). At the same time, there is also a large contingent of this forum - mostly the lay community - who take or have taken many of these drugs themselves, and some who have had positive experiences. Opinions differ - often vehemently. Ultimately, everyone needs to find their own level of risk-comfort and attempt to balance that against the knowledge that we are all, to some degree, desperate and frightened.

All of that said: in the NYC area, I have experience with Dr. Scoma and with the CoRE Clinic at Mount Sinai. I am happy to send a DM concerning my experiences.
 
DHagen said:
which, frustratingly, seem unlikely to ever arrive
Click to expand...
We have an LDN and Mestinon double blind RCT in the works.

And another just LDN one.

Scheibenbogen also mentioned trialing apiprazole (abilify) in future plans IIRC.

I don’t think people in the forum say these drugs should absolutely not be prescribed. At least in the case of OI ones and low risk ones like LDN.

The consensus seems to more be that they should be treated as experimental drugs with minimal evidence. Which (rightly imo) makes us sceptical of doctors promising treatment and expertise when there is no proven treatment.
 
There are not really good specialist or Gp’s that deal with the disorder primarily these days. They would be burned out after a year because they would be booked out solid for over a year. They used to exist and some of them were outstanding. These days if you are lucky you will be referred on to someone who sees it for what it is (an unknown disease) or a misdiagnosis and try to help you. I can speak of Australia and these doctors do exist. I am sure in the states there will be some Dr with personal history with the disorder. Best of luck. I know what it is like.
 
Yann04 said:
We have an LDN and Mestinon double blind RCT in the works.

And another just LDN one.

Scheibenbogen also mentioned trialing apiprazole (abilify) in future plans IIRC.
Click to expand...
You are, of course, correct - I was writing from a place of frustrated pessimism and should be more cautious about doing so. I do hope that Scheibenbogen et al really do run the apriprazole/LDA trial alongside the (currently) sexier mAB trials. I assume that the LDN/Mestinon trial you reference is the OMF LIFT trial - would you mind reminding me who is running the RCT on LDN alone?

Yann04 said:
I don’t think people in the forum say these drugs should absolutely not be prescribed. At least in the case of OI ones and low risk ones like LDN.

The consensus seems to more be that they should be treated as experimental drugs with minimal evidence. Which (rightly imo) makes us sceptical of doctors promising treatment and expertise when there is no proven treatment.
Click to expand...
That's certainly fair, though I do have the impression that there are some who do take a more extreme position - perhaps rightly. I am very torn with regard to my own views on the matter. I certainly did not mean to attack the skeptics (indeed, I envy them their strength), merely to share my own reading of the forum, which (obviously and to its benefit) differs considerbly from every other ME/CFS space online.
 
I would never judge anyone trying a treatment. We're all desperate to get better.

My problem is doctors and therapists who go on prescribing the same treatments for years without any clinical trial evidence or even doing any systematic follow up of their patients.

I am also critical of people who have improved or recovered while trying a treatment going all over social media saying they have found the cure and in some cases even making money out of others' desperation, and accusing us of not wanting to get better if we don't take their advice.
 
The other thing is that if there is a treatment that actually works then someone does a trial and gets kudos because it's easy. The main reason for trials not being done is that doctors know that the treatment doesn't actually do that much so a trial would just reduce the number of options for selling people 'hope pills'. LDN is probably the paradigm case.
 
Yann04 said:
I don’t think people in the forum say these drugs should absolutely not be prescribed. At least in the case of OI ones and low risk ones like LDN.

The consensus seems to more be that they should be treated as experimental drugs with minimal evidence. Which (rightly imo) makes us sceptical of doctors promising treatment and expertise when there is no proven treatment.
Click to expand...
Returning to this point, I think it is pretty clear (as this thread is already beginning to demonstrate) that there is a view, even if not explicitly stated, that trying these drugs is a sort of moral failing (even if people are quick to point out that it is an understandable one) and that believing that one has or is benefiting from them is a failure of rationality. This may be a good thing and it may be a true thing, I am honestly not sure; as I've said, it's something that I struggle with a great deal.

I am commenting on this because I suspect that I am not the only one, particularly when considering new arrivals to the forum, who experiences a great deal of distress about pursuing treatment. That said, I recognize that I may be mistaken and speak only for myself. Being seen (and actually being) victimized by those from whom one seeks aid is an upsetting enough prospect - but what if one actually sees some improvement? Then you've not only been taken in, you've been exposed as someone stupid enough to believe that the "hope pills" you've dumped your time and money into actually help.

I don't have a solution or even a recommendation for how best to deal with the issue, nor still am I suggesting that those commenting here should change their behavior. I think the members of this forum are all acting as best they can under extraordinarily difficult and complicated circumstances. I just want to acknowledge that dealing with all of this is hard, and can be particularly so for those for whom many of these viewpoints are entirely new, or have previously only been encountered when dealing with people who deny the existence or severity of ME/CFS entirely.

[edited to correct a couple typos and some awkward phrasing. I am otherwise leaving the original post as-is, but, as I wrote below, I wish that I begun by stating "...it is easy for some to get the impression that there is a view..."]
 
Last edited:
DHagen said:
Returning to this point, I think that there is a pretty clear (as this thread is already beginning to demonstrate) that there is a view, even if not often explicitly stated that trying these drugs is a sort of moral failing (even if people are quick to point out that it is an understandable one) and that believing that one has or is benefiting from them is a failure of rationality. This may be a good thing and it may be a true thing, I am honestly not sure; as I've said, it's something that I struggle with a great deal.

I am commenting on this because I suspect that I am not the only one, particularly when considering new arrivals to the forum, who experiences a great deal of distress about pursuing treatment. That said, I recognize that I may be mistaken and speak only for myself. Being seen (and actually being) victimized by those from whom one seeks aid is an upsetting enough prospect - but what if one actually sees some improvement? Then you've not only been taken in, you've been exposed as someone stupid enough to believe that the "hope pills" you've dumped your time and money into actually help.

I don't have a solution or even a recommendation for how best to deal with the issue, nor still am I suggesting that those commenting here should change their behavior. I think the members of this forum are all acting as best they can under extraordinarily difficult and complicated circumstances. I just want to acknowledge that dealing with all of this is hard, and can be particularly so for those for whom many of these viewpoints are entirely new, or have previously only been encountered when dealing with people who deny the existence or severity of ME/CFS entirely.
Click to expand...
I’m not sure I agree with everything you’ve said but I definitely agree in my experience we can sometimes be a bit cold or strong on that particular point which perhaps is hard on new people.

But also this is the one haven from the “you have to try things to get better”/unsollicited drug advice on other platforms and we are pwME with limited energy.
 
DHagen said:
I think that there is a pretty clear (as this thread is already beginning to demonstrate) that there is a view, even if not often explicitly stated that trying these drugs is a sort of moral
Click to expand...
You are on the ball DHagen with you comments but I have been on this forum since the start and have not really got that view about experimenting with substances. There is just a lack of evidence and some Dr are pushing stuff at great cost. I think some of the substances you have mentioned in the past are pretty reasonably safe though if you want to experiment.
 
Holinger said:
You are on the ball DHagen with you comments but I have been on this forum since the start and have not really got that view about experimenting with substances. There is just a lack of evidence and some Dr are pushing stuff at great cost. I think some of the substances you have mentioned in the past are pretty reasonably safe though if you want to experiment.
Click to expand...
Upon reflection, I see that I would have done better to say "...it is easy for some to get the impression that there is a view..." or something similar, rather than making a statement asserting the ascribed view as fact. My apologies and my thanks to those who have pushed back.

I also want to be clear that I understand that even the most critical and dismissive of experimental treatments (those commonly rx'd and otherwise) most often speak from a position of hard won experience - and I certainly don't want to deny that to anyone. I am grateful to everyone for sharing their views and for being allowed to share in this community. Please don't take my comments as an attack, but rather as an attempt to document some of my own experience for the possible benefit of others who might find themselves similarly disorientated and struggling to come to grips with new, often unexpected perspectives and information.
 
To my mind nobody here sees trying drugs as a moral failing, even if it might seem like it. But encouraging others to do so through passing on whatever is floating about on social media I think probably is. We have had a hard time pushing back against some seriously dangerous quack treatments being paraded here. In fact the forum came into being because of that problem somewhere else.
 
I think many, if not all, of us with long term experience of ME/CFS have been through phases of experimenting with everything we hear about that might help. I tried some ridiculous things. Some of us then decided to take a break from forcing ourselves through yet another unevidenced treatment. Others will go on experimenting. I wish them well, and when anyone tells us they have improved on a treatment I am always pleased for them.

What I can't tolerate, and we don't allow on this forum, is members suggesting to each other they should try treatment x. It's such a relief to be in a space where there isn't pressure and people egging each other on to try things and to keep trying more things. Where we're not being told we don't really want to get better if we don't keep experimenting.

We have had some people joining the forum with the express purpose of pushing pwME to try particular treatments and protocols. I have even had a few of them contacting me by forum private message suggesting they think I'm a good candidate for their favoured treatment. I can think of 3 instances. If that happens, please report it to mods, as it's against the rules.

In this context it's worth reading the No medical advice rule and the accompanying guidance. We want to keep this as a safe space for pwME. I think that makes the forum have a different feel than any other space I've come across. And it's a big part of the reason I spend hours most days on the forum and helping to run it.
 
Trish said:
What I can't tolerate, and we don't allow on this forum, is members suggesting to each other they should try treatment x. It's such a relief to be in a space where there isn't pressure and people egging each other on to try things and to keep trying more things. Where we're not being told we don't really want to get better if we don't keep experimenting.

We have had some people joining the forum with the express purpose of pushing pwME to try particular treatments and protocols. I have even had a few of them contacting me by forum private message suggesting they think I'm a good candidate for their favoured treatment. I can think of 3 instances. If that happens, please report it to mods, as it's against the rules.

In this context it's worth reading the No medical advice rule and the accompanying guidance. We want to keep this as a safe space for pwME. I think that makes the forum have a different feel than any other space I've come across. And it's a big part of the reason I spend hours most days on the forum and helping to run it.
Click to expand...
I very much hope that I have not expressed anything that comes close to contradicting what you have stated here or that could even be interpreted as disagreeing with the principles you've laid out. I am enormously grateful to you, and to all here who both keep the forum running and defend the principles upon which it was founded.

Really, I think the core of what I wanted to express was this:

"Hi future readers. If you are like me, you might have arrived on this forum after having spent time in other ME/CFS spaces where medications and research are discussed, and you might be surprised to learn that not only is a lot of what you believed to be generally accepted within the medical/scientific community disputed here, but that you will sometimes see it discussed with mocking and scornful language. You might find providers that you have relied upon ridiculed and treatments that you have tried, are planning to try, or even believe to have been helpful are dismissed as ridiculous. This can be a shock. Again, if you are like me, you might find yourself experiencing greater difficulty navigating an already difficult situation not only because you gaining new information and a greater appreciation for the complexity of your predicament, but because a new set of perceived authority figures are so disdainful of views that you yourself might have held, hold, or currently be exploring. I have found this difficult, but am still here. In time, you may come to agree with these new voices, or you might find that there are some with whom you will struggle to find common ground. This can be a good thing, but I know nuance, ambiguity, and conflicting voices full of confidence and certainty can be overwhelming at the best of times, let along when one is actively drowning. Hopefully you will ultimately find the information offered here useful. If you also find it hard, know that you are not alone."

Also: don't waste days worth of energy crashing yourself on multiple occasions responding to someone else's snark, only to delete the message before posting and then fall back into bed full of self-loathing. People are entitled to their snark sometimes and it doesn't have to be your problem.

Apologies if this really wasn't the place for any of this. Thanks to everyone for engaging.
 
Last edited:
Hi @nwbh - in case you haven’t done so already, you might contact the MassME organization, as one of the services they offer is doctor recommendations (which have been crowd sourced by other patients). Most of their docs are in Mass given the location of the organization, but they do keep track of others in the US, so they might know about NY.
 
You must log in or register to reply here.
Back
Top Bottom