Long COVID & PSV ECHO: Navigating Mental Health Considerations in ME/CFS, PASC, & Dysautonomia

[@serenebeth]

It's always rewarding when clinicians dig deeper, are persistent, and get to the underlying cause of symptoms. In today's presentation, this happened with the case involving systemic mastocytosis. I want to add that, as I was listening, I thought many of the symptoms of several of the cases could possibly overlap with the nuanced presentation of Autism Spectrum Disorder (ASD) in females, so many of whom are undiagnosed (for myriad reasons). It behooves all clinicians (and everyone, for that matter) to brush up on recent revelations re: the understanding of the presentation of ASD in females, so that may also be considered in the differential diagnosis. Thank you all for your ongoing work.

[@buffienguyen]

This was informative and done with lots of compassion for the people who are suffering and often misdiagnosed/overlooked. Thank you!

[@lisakraft6952]

I've been living with ME/CFS for 20 years. I do not suffer from depression and have had to ask my doctor to remove it from my list of diagnoses. A couple of years ago, I had a neuropsych evaluation. Results showed high IQ, but low score on problem-solving. Therapist wrote in her report a likelihood that I have conversion disorder. Recently, I was denied disability benefits due to lack of medical proof. Thank you for this video.

[@MrFilip121]

You haven't got a depression? What about anhedonia? What are your main symptoms?

[@lisakraft6952]

@@MrFilip121 The only reason I don't find pleasure in activities is because I don't feel well while doing them. However, I still long to do all the things I can't. My husband can make a silly joke and I'm laughing right along with him. I get discouraged at times (otherwise I wouldn't be normal), but I do not have clinical depression. Main symptoms are fatigue, post exertional malaise, non-refreshing sleep, and pain (various forms).

[@DownwithMecfs]

@lisakraft6952 Sorry this will be long, but please read down, it might help you with disability. My condition sounds very similar to yours, neurocog showed no depression, high IQ but terrible on memory and processing speed. Same main symptoms, plus the sensory issues and POTS. I had pushed through for many years before I finally figured out, and was able to medically demonstrate, what was going on with me (mod-severe ME and dysautonomia). My body finally collapsed and I have been largely bed or housebound for 3 years now at 10-30% functionality. I’ve experienced depression in the past at times, but I simply am not now. Despite my illness I still have hopes and dreams, a positive attitude most of the time, and lots of things I’m dying to do - along with the frustration of knowing there’s a chance I may never get to. Working on both aspects of that. Anyway, I mainly wanted to let you know that I was approved for both LTD through my employers insurance and (finally) SSDI. I know I am super fortunate I was able to do the necessary tests to objectively demonstrate my level of disability, and regrettably many people cannot do so either physically or financially. But I hope this info can help you and anyone else who might need to read this: I did the 2day CPET test with Workwell Foundation in Ripin CA. My results were far more severe than even I expected, and their reports are clear and objective. They take the time to interpret the results in specific Labor Dept-defined terms regarding the patient’s ability to function safely and the necessary limitations to prevent worsening the condition. I think the test is in the $3k range, and yes I crashed for a week after the travel and testing. But it was so worth it to obtain that revealing data and interpretation by their PhD Exercise Physiology researchers, which the SSA and insurers deem valid and objective. That alone didn’t suffice for the SSA in the first stage of my disability application, however. I was, as is typical of nearly all, denied initially. During the ‘reconsideration’ stage, which happens before one is typically denied again and forced to appeal, I also submitted visual proof of my POTS. I did a self-administered NASA Lean Test, and recorded it all on my HR tracking device. I first laid down for 10 min, then stood for the test for 10 min, then laid back down another 10, then sat in an office chair mimicking normal desk work positions and arm movements for 10 min, then laid back down and ended the test. I also took pictures of my legs and hands before and after the tests, which side-by-side revealed the extent of the blood pooling, even in sitting feet-on-floor position. I managed to put the HR readouts, pics, and a description of what I experienced during the tests into a pdf. Shortly after I submitted this to the SSA, I was approved, which is rare at that stage. It was amazing to see how undeniably and clearly the HR readouts and purple legs demonstrated the POTS. I’m sure it was the combination of the 3 results that won my case: neurocognitive, CPET and Lean Test. Of course I am not saying this would be the case for anyone else, but it’s certainly possible. Workwell and BHC’s disease explanations and pacing guidance have been quite helpful, and I am seeing improvements - slow, still unpredictable and non-linear, but improvements all the same. Best of luck to you, hope this helps! Edit: of course, factors like eligibility via work history and credits, possibly age, and others can also affect whether one is approved for SSDI or not.

[@nanasloves]

I’m in Utah. How can I get help? I can’t get a Dr. to do the research. Thanks!

[@Yazzie101]

The headaches are probably MCAS .. histamine headaches is pain in center of forehead! Severe! Xyzal helps but only a short time! Xyzal build up in the blood so had to stop! I don’t get headaches if I stay away from anything processed etc! Micro clots I’m worried about and no testing! VitD levels lowered with long covid so working on that as it affects anxiety & depression!

[@lisakraft6952]

I'm so sorry!

[@plantagominor722]

Doctors I had seen in the first 3 years of my illness all jumped straight to a mental health diagnosis - including, in many cases, by recording symptoms I did not have and did not report ("loss of interest in previous activities" being the most memorable and funny - like saying that a paraplegic has lost interest in soccer) It took a long time to get depression removed from the diagnosis list in my health record.

[@lisakraft6952]

This was similar to my situation. I hope you are getting better care now.

[@caseyj1144]

17 years un/mis diagnosed

[@lisakraft6952]

😔