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May 4 22 tweets 9 min read
Ok. Another request, another 🧵. Today, we address the strained relationship between psychology, psychiatry and #LongCovid. Much of this may also apply to #pwME and other infection-associated chronic illnesses (h/t again @microbeminded2) and other “invisible” illnesses (1/n)
Psychology and psychiatry have a complex history with syndromic illnesses. Why? When illnesses are diagnosed on the basis of symptoms rather than “objective” tests, some clinicians will doubt the reality of the condition. Let’s start by psychoanalyzing them, shall we? (2/n)
This behavior is not justifiable, scientific or ethical. But it is also is not new: in the 1800s, tuberculosis was regarded by most physicians as the “disease of the sensitive” before tubercule bacillum was discovered, the “cancer personality” was touted for decades (3/n)
in “modern medicine”, before being famously called out by Susan Sontag in her book “AIDS and its metaphors” as she brilliantly concluded that we ‘metaphorize conditions that we do not understand’. Unfortunately this “clinical fragility” has continued into the present day (4/n)
Ask @Dysautonomia how many people with #POTS/#dysautonomia are diagnosed with anxiety prior to receiving an actual diagnosis of dysautonomia (years later)? Or how many #pwME in the #MECFS community have been actively harmed by the now-discredited-but-not-discredited enough (5/n)
“PACE trial”, which led to the famous statement that all people with #MECFS need to recover is “exercise and positive thinking”. We could go on, but suffice to say, there has been a legacy of horrific damage associated with the tendency to psychologize illnesses that are (6/n)
poorly understood on a physiological level. This is hard to recover from, and I think that #medtwitter treating #LongCovid and other infection-associated chronic illnesses need to be aware of the emotional labor they are asking of a patient when they refer to psych services (7/n)
as well as the rationale behind the referral to psych so that the person does not feel they are being “abandoned to psych” with no other treatment options being presented. With all of that said, what are some roles for psych services in #LongCovid?
1. Working through the (8/n)
emotions associated with the diagnosis of a chronic condition. FACT: #LongCovid is a highly debilitating chronic condition with (as yet) no cure. People with LC are likely to feel grief and other strongly negative emotions around this fact. Psychologists can be helpful in (9/n)
working through these emotions, assisting them with strategies for regulating these emotions (more on this later) and helping them with associated feelings of depression and anxiety that may develop in response to their diagnosis (psychiatry may be looped in here in cases (10/n)
where meds are indicated).
2. Helping people with #LongCovid navigate changes in relationships due to their diagnosis. One of the cruelest facets of #LongCovid is its ability to isolate those who live with it. Those with LC may look (mostly) like the same person, but (11/n)
they are not. One of the first things to go is socializing. For those without #LongCovid, let’s take a moment to acknowledge how stressful/draining it must be to manage 15+ intermittent, terrifying and uncontrolled symptoms whilst trying to engage in social interaction (12/n)
we can’t really ever understand, but suffice to say, most people with #LongCovid learn to avoid it right quick. There is a reason that those with #MECFS have championed the hashtag #MillionsMissing - because that is what these illnesses do: they put you on the missing list (13/n)
Families, friends, work colleagues, etc don’t understand: “you don’t *look* sick”, and this leads to near constant gaslighting. An important part of self-care in these situations is understanding that being equipped with emotion-regulation techniques in these moments can (14/n)
save you from experiencing a flare or crash as a result of the stress and emotional exertion that a negative interpersonal interaction that can bring about, which leads me over to 3) regulation, regulation, regulation: #LongCovid is indeed a condition of consequence. (15/n)
Exertion harms people with #LongCovid and exertion can take different forms: physical, cognitive and emotional, for instance. Pacing and regulation are *just as important* for your emotional labor as it is for physical and cognitive. A good psychologist can help you with (16/n)
emotion regulation strategies to help with stressors that you are hitting in your daily life that are causing setbacks for your health. Beyond these 3 main points on the role of psych services in #LongCovid care, I want to acknowledge that in very rare cases we have seen (17/n)
severe psychosis related to (we think) immune-mediated encephalitis which has required immediate and aggressive medical management, and that neuropsychologists can have an important role (re: my last thread) in assisting with #LongCovid-related cognitive dysfunction (18/n)
I also want to restate clearly that if a healthcare provider is psychologizing your #LongCovid rather than recommending psych services as *supportive care* to deal with issues that have been caused by LC, not the other way around, find a new provider ASAP. (19/n)
Finally, we must acknowledge that many cannot afford or access the psych services that they need and that is a shameful fact. To these individuals, I say embrace your community: the psychological benefits of peer support are incredibly robust and powerful. Every single day (20/n)
I feel grateful knowing that there are groups like @itsbodypolitic (and so many others!) out there who create safe and responsible spaces for people with #LongCovid to share their experiences and support one another through challenges. Please take advantage of peer (21/n)
support groups in the #LongCovid community, as there are few things more additionally damaging to a person with a chronic illness than social isolation. As always - apologies if I have left something obvious or non-obvious out of the thread. I hope this has been helpful 🙏🏻 (end)

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More from @PutrinoLab

May 1
Ok. As promised, here is a super-🧵 on cognition and #LongCovid. This will be a combination of published material and things that we have observed in-clinic. This is not intended to be definitive nor epidemiological and so it is highly likely that your personal experience (1/n)
may deviate significantly. This is about my reading and experience of cognition and #LongCovid but from what I have seen shared in the comments of my tweet yesterday, it seems that much of this may apply to other infection-associated chronic illnesses (h/t @microbeminded2) (2/n)
such as #MECFS, #Lyme and #dysautonomia/#POTS to name a few. Let’s start out with naming. I try not to use the term “brain fog” because I don’t think it conveys the seriousness. People with LC are experiencing cognitive dysfunction that often results in cognitive impairment (3/n)
Read 25 tweets
Apr 14
To the #MECFS community: I feel I owe an explanation to you for behavior that many of you have noticed. When this whole, mad journey into #LongCovid began, I barely considered myself an "expert" (whatever that word means) in LC, let alone ANY simple understanding of ME/CFS. (1/n)
My clinic had never seen a person with #MECFS, I had not deeply read the literature, and I didn't feel I had anything to bring to the conversation. I focused on #LongCovid and tried not to think about or mention ME/CFS. Not because I didn't care about this community, but (2/n)
because *my own insecurities about my lack of knowledge* led me to clam up. I recognize, wholeheartedly, that this was the wrong approach. Many of my statements/publications/media would benefit greatly from inclusion of the #MECFS community. I've been blessed to learn (3/n)
Read 5 tweets
Jan 29
There is a critical need for the clinical world to move on from the misguided understanding that physical inactivity is harmful ABOVE ALL ELSE. Physical activity and exercise (even mild) is very clearly harmful for so many people with #LongCOVID. A thread (1/n)
Consider a car crash survivor with severe multi-organ damage, you don't tell them "look, every minute you're lying in this bed you're becoming unfit! Let's get you on a treadmill". That’s insane. Yet, many with #LongCOVID are being told this insanity daily (2/n)
We know the multisystem benefits of exercise for those who have normative physiology. We get it. People with #LongCOVID no longer have normative physiology. We must solve the underlying issues causing #LongCOVID before clearing people to return to exercise if that's a goal (3/n)
Read 5 tweets
Nov 7, 2021
Since the "I'm recovered, but..." variant of #LongCovid seemed to resonate here, let me share the next part of my personal thought process on this: we need a metric in medicine for how much effort someone has to put into feeling ok. So many people feel "conditionally ok" (1/n)
"I can feel ok so long as I do x, y and z religiously, otherwise my health gets really bad" - this is often not viewed as pathology, and this is a trap that many #LongCovid patients may fall into - fine so long as they put an incredible amount of effort into their health (2/n)
This is why historically excluded groups and people living near the poverty line will be disproportionately affected by #LongCovid: the amount of time and effort required to stay healthy will not be compatible with the lifestyles of many, leading to worsening disability (3/n)
Read 5 tweets
Sep 27, 2021
I feel like the #LongCovid community has experienced a weekend of intense reflection and self-effacing conversation (because of *that* @NewYorker article) about what it means to be an ally and advocate. Phenomenal content from @itsbodypolitic and others on what it means to (1/n)
be a patient-led advocate and ally, so I wanted to start a thread on what it means to be a clinical and research ally for #LongCovid. @DhruvKhullar's @NewYorker article was bad. In the face of backlash, he tried to explain that the piece was intended as a call to action (2/n)
for #LongCovid. The LC community disagreed. Resoundingly. If we take @DhruvKhullar at his word - he was genuinely trying to help - how then, did his piece miss the mark so badly, and what lessons can us as clinicians learn about how to be an ally and advocate to patients? (3/n)
Read 14 tweets
Apr 26, 2021
There have been some really thoughtful comments since we shared our first #longCOVID rehabilitation paper on here and I wanted to take some time to transparently share 5 points about how our team has been tackling this complex and challenging problem - a thread (1/n)
1) Let's start with the "camp problem". Since the beginning we have noted the fact that #longCOVID shares similarities with #POTS, #dysautonomia, #CFSME, #MCAS, various #autoimmune conditions, et al. We are speaking with all of these communities and we are learning (2/n)
from some truly wonderful clinicians and patients, but we are not going to silo #longCOVID into just one of these conditions. In fact, as a group, our working hypothesis is that #longCOVID is unlikely to be one single condition...it is probably more like 5-10. (3/n)
Read 11 tweets

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