Putrino Lab Profile picture
May 4, 2022 22 tweets 9 min read Read on X
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)

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Putrino Lab

Putrino Lab Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @PutrinoLab

Sep 18
A deeply moving story from @thesicktimes covering the reality that @thephysicsgirl and Kyle having been living for years now since Dianna got #LongCovid. The reality of bed bound individuals with infection-associated chronic conditions is grim. While 1/

thesicktimes.org/2024/09/17/for…
I will not be attending @NIH’s #RECOVER-TLC meeting next week (because I have at least 1000 ways to be actionably more productive to pw #LongCovid than to scream into that unmasked echo chamber), I sure do hope that someone brings up how badly they have failed to fund research 2/
that includes bed-bound individuals. This is in spite of incredible folks like @hmkyale and @VirusesImmunity creating replicable and scalable models for decentralized clinical trials for pw #MECFS, #LongCOVID and chronic #lyme that enable participation from home. We have so 3/
Read 6 tweets
Sep 4
Dangerous garbage being presented “science writing”. Two *actual* facts surrounding #COVID infection:
1. Your risk of #LongCOVID, a currently incurable chronic illness, after surviving an acute COVID infection currently sits conservatively at ~6-7%
2. Your risk of LC increases 1/
with each infection.

Now, in the face of this information, there are really five (or so) types of reactions:
1. Disbelief and denial
2. Being unaware or uninformed of the risk
3. Believing appropriate caution is necessary to avoid Long COVID
4. Believing it is worth the risk 2/
to yourself AND OTHERS to live your best pre-COVID life
5. Not having the financial freedom to not risk yourself and others by not taking precautions

Regardless of which of these 5 lanes you live in, won’t change the first two FACTS. So, as a person of questionable influence, 3/
Read 7 tweets
Aug 3
Just in case you were wondering why I’m just one big constant eye roll when these so-called experts who treat functional disorders tell us that they “have the tools” to treat complex patients and frame those of us who are actually doing the work as “anti-recovery activists”, 1/
let’s look at a recent publication that was a meta-analysis of studies evaluating the efficacy of treating so-called “functional limb weakness”: a branch of FND that the authors abbreviated to FND-par (short for ‘paresis’). If you dig into the paper you 2/sciencedirect.com/science/articl…
Will see that they did a meta-analysis of 7ish studies looking at outcomes of 348 individuals who were treated for FND-par. Treatment varied across studies but largely consisted of psychotherapy and/or PT. Outcomes were largely self-reported impression of improvement. So, they 3/
Read 12 tweets
Jul 29
I try to give everyone the benefit of the doubt and I try to be fairly slow to anger, but jfc I just can’t with these #MECFS- minimizing clowns. Thank you, as always, to @davidtuller1 for taking the time to listen to every argument from would-be clinicians and every gut- 1/
wrenching detail of abuse and dire malpractice (which all too often ends in death) from people with #MECFS and their families. Your body of work is beyond reproach and I can only guess at the toll it takes, but we are so grateful for the work you do. Keeping receipts on this 2/
matter will be crucial as we begin to obliterate the anti-science rhetoric that clings to #MECFS and other infection- and exposure associated chronic illnesses. Cognitive behavioral therapy (CBT), graded exercise therapy (GET) and their cousins/rebrands (e.g Lightning Process, 3/
Read 12 tweets
Jul 10
I’ve been fortunate enough to have some time to stand back and reflect on the state of the field of post-acute infection syndromes(PAIS)/infection associated chronic conditions (IACC) such as #LongCOVID, #MECFS and chronic #Lyme and I wanted to share some opinions. Before I 1/
begin, a couple of disclaimers:
1) This is a topic that brings with it a lot of passionate points of view. I’ve turned off comments because I don’t want arguments to break out in this 🧵
2) I’m not a patient and I’m not a part of any advocacy org. I’m a scientist and an ally 2/
for pw IACCs. This means that I’m not going to tell people with #longCOVID, #MECFS or any other IACC how to feel or how to act about opinions of mine that run counter to theirs: I’m simply going to openly and transparently share my grasp of the science and the field whilst 3/
Read 26 tweets
Jun 26
NGL, @CDCDirector’s response on #LongCOVID isn’t it. Dr Cohen - you have the power to chart a helpful course forward for millions of desperately ill Americans if you have the courage to support pwLC and, most importantly, follow the science: plz don’t let this be your legacy. 1/
Just telling people to vaccinate is not a strategy against #LongCOVID: how about HEPA filters, far UV lights, ventilation, regular testing and masks?? These are feasible strategies that can significantly reduce acute infection risk. You have a friend with LC? OK - so maybe 2/
out of respect to that friendship and to the millions of others who are suffering, plz choose your words more carefully: #LongCOVID doesn’t last for months and months - it lasts for years and years. And we have no cure. And we have no @US_FDA approved treatments. In addition, 3/
Read 8 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(