posted Anonymously
@anonymous
Does not understand PEM,
I was very hopeful after my first call with Dr Summers as she seems better informed than other doctors about LC, MECFS, and related conditions (low bar.) I think maybe my desperation for a competent provider lead me to ignore a few yellow flag, that then turned bright red as we had 2 more sessions that ultimately led me to the worst crash and extreme baseline drop I’ve ever had, im writing this over multiple months to try and warn other patients. She initially told me that other doctors don’t mask because they are traumatized, I took this to mean she masks effectively, especially when conducting house calls (something I am desperate for as I am mostly bed bound.) Boy was I wrong. This is a direct quote from an email she sent me when I specified I would like n95s to be worn inside my home during the appointment especially as I would need to take my mask off for at least part of the treatments, and there are other people i live with who also need to be protected. What she said: “As for masks, the main function is to prevent infection to the individual wearing it and not to prevent the person wearing it from spreading. I could wear an N95 but could only wear that less than 30 minutes as it is too uncomfortable to wear it longer than that. Otherwise, I could wear a regular surgical mask.” This is wrong, there is a solid study in The Lancet specifically about masks as source control. Also if all n95s are genuinely too uncomfortable, PAPRs exist, or Readimask, etc. I worry about other patients believing her and the damage she is causing by straight up lying and assuming patients will believe her lies because she is a medical authority, and potentially the main source of necessary medications. Many other issues have also come up. At first, she was quick to respond, when labs she had said were sent in were not at labcorp she was available to try again and luckily I was able to get those initial tests done without having to travel twice. That said, I have asked her multiple times to send additional tests to labcorp, she said she had, I just called them again and they have no tests for me. Same thing with prescriptions, after our first appointment she quickly filled things I needed. Now the pharmacy has called at least 6 times, leaving multiple messages, and she is not responding or refilling medications I NEED. I’m not sure if she is acting this way because I have been too sick to continue the SE therapy she was certain would help me (but is actually the reason I have to be in nearly constant dark and silence now), and she continued to push for me to do just a few minutes of a sound practice, or just a few minutes of SE with physical touch. She insisted that she knew what was best for me, and that coming into my home to touch me (part of her SE protocol) would be beneficial even though I have severe skin sensitivity due to reactivated EBV and can’t tolerate being in the same room as family or friends, much less touched by a strange who won’t adequately mask. Her shtick seems to be about helping the nervous system feel safe. She not only makes me feel unsafe, but actively is a threat to my health, making me actually unsafe. I did not let her into my home and am so grateful I trusted myself instead of her insistence. If you are severe, or even moderate, I would be extremely careful in inviting Dr summers into your life and support team. If you are mild, maybe she’s a better option than other doctors, but again, that’s in no way an endorsement of her, I think she is quite dangerous, and unwilling to listen or accept when she has harmed patients or work within the bounds of PEM and baseline reduction. I feel like I have at least 5 more anecdotes of her being sure she was being accesible and accommodating, but actually causing harm and me just having to put up with it while I could. From removing a caretaker from an email thread after she was told I was in a serious crash and needed him involved, to sitting in front of a blindingly bright window when I said I could only do zoom if she had a dark background, this doctor is not currently equipped to support moderate or worse MECFS patients. I’m submitting this anonymously because I’m still trying to get a partial refund from her, even though if she reads it the direct quote will show who I am, but I also would love to connect with any others patients who see her, and will check reviews as time goes by.
