I am a hematologist but don’t tweet much about hematology because there are other great people that do. I tweet about issues that need more attention: unchecked pandemic that still causes daily new disabilities/post-viral syndromes and medication safety
Hey
@ashishkjha
my cancer patients will be wearing masks in public whether you think it is “fringe” or not. It is their RIGHT to protect their health. But thanks for stigmatizing them and putting them at risk for hate violence.
#YallMasking
let’s blow this up
By calling masks "fringe" Jha is contributing to stigmatization of an effective public health tool so that he can punch left and right in order to further his personal centrist political views. It is completely wrong to put your own politics above public health like this.
The
@GOP
in North Carolina is trying to rescind the health exemption for public mask wearing. In other words, all of my chemo patients that wear masks with crowds to protect themselves could be arrested for protecting themselves! What on earth are you thinking?
New CDC
#SARSCoV2
genomics
The KP.3.1.1 variant continues its rise to dominance in the US, accounting for largest fraction of new Covid cases, and a driving force for the current wave
It is a common joke among providers that patients say “I did my research”. It is not a joke for me. I invite it. Do your research, bring your questions
@AdeAdamson
@adamcifu
What about vulnerable people that wanted to attend? You are outraged about the regular people being cold but not about vulnerable people catching covid.
It blows my mind that olympic athletes spent 4 years training for this moment and their team didn’t think to protect them with high-quality masks just before the actual competition.
If you live with a rare disease, then you probably ARE more qualified to speak about it than a doctor who maybe spent one afternoon in med school learning about the condition you experience every day and have likely researched far more extensively and diligently than they have.
I am so tired of providers not discussing the risks of medications/interventions because patients “might get scared”. It is THEIR choice. Give them ALL the information
@tessfalor
Honestly, until I started reading about long covid I had never, in my entire 14 years of medical training, heard of MECFS. And most physicians don’t. But this is not the problem. The problem is that once they encounter something they don’t know, they do not educated themselves
@ChrisAlvino
my wife wanted to do it and I looked into the data. There was a sub 1% chance of keratectasia and infections and blah blah. Glasses are fine. No reason to risk your life over this
@AdeAdamson
@adamcifu
in 2019 there was no airborne lethal virus. They could wear a N95 mask but even this can fail in a room full of people without proper ventilation. And how do they know if the maintenance guy ensured good ventilation? A big chunk of population has health issues
@AdeAdamson
@adamcifu
Everyone has their own risk assessment and comfort. All I am saying is that we should not be outraged when a center accommodates vulnerable people compared to every other aspect of modern society that doesn't give a buck about them
I am part of a few physician support groups and it is interesting that every time someone asks about covid isolation 90% of the answers are “negative test” and not the unscientific
@CDCgov
guidelines. Hey
@CDCDirector
did you even ask the physicians or just the companies?
If I was taught in medical school about
#MECFS
, I would have definitely chosen a career in academia researching it. When a disease has no treatments, there is a ton of space for contributions. Oncology on the other hand much harder to have a real impact as a researcher
I actually do check this now. After I discovered how many more problems patients report compared to what literature captures, I go and check patient groups for every med I want to prescribe or take
The only reason this woman died is that we failed to recognize
#MyalgicEncephalomyelitis
as the disease it is and fund it appropriately. The average physician out there thinks that chronic fatigue syndrome is another term for laziness
@AJKayWriter
Sure you do you. But please stay at home when sick. Other people might not be as privileged in their health and they would not fare well with the virus
Since I became aware of the undisclosed risks of psych meds, I have read so many heartbreaking stories. Thousands of lives ruined because
1) we didn’t taper the drugs correctly
2) we didn’t recognize side effects
3) we didn’t acknowledge protracted withdrawal
Stop this madness
It took 30 years and one of their own (
@markhoro
) to suffer through disabling withdrawals for Psychiatry to produce good deprescribing guidelines (The Maudsley Deprescribing guidelines). What does this say about how we listen to our patients?
"Hello everyone, unfortunately I have to announce today that I will not be able to take part in the Olympic Games in Paris. I suffer from a so-called post-infectious syndrome caused by a viral infection... the cause of this syndrome is unclear... in February of this year I
For people that do not know what extremely severe ME/CFS looks like: some patients have such energy limitations that they cannot chew or swallow. When that happens usually they end up in the hospital. Unfortunately most providers do not know anything about this disease 1/3
A poignant image created by Jornelia Paulsen (the ME shrinking world pictures are also hers IIRC) on the
#MaeveInquest
and imagining all the seats in the court room taken up by other ME patients as imagined by Dan Wyke.
It is a common theme among patients with chronic illness that friends exit their lives. It goes to show that most friendships in our society are superficial and based on gains - networking, having fun etc
In 2017, my best friend said I'd become a shell of my old self and ended our friendship. Everyone else followed suite.
Just one friend continued to check in on me, even though she was busy starting a family. She is my most cherished friend, and also my only friend.
2/
I was discussing with a young woman that was raped in the past and has been tapering first benzo and then mirtazapine over the last 4 years. She told me “I would prefer to get raped again than having to taper these drugs”. It gives you an idea of how awful this experience can be
Antidepressant withdrawal and online support
We keep getting told that psychiatrists have never seen antidepressant withdrawal or that it is at best minimal.
Online tells a different story. There are currently over 100,000 people in Facebook support groups desperately trying
I do believe that there is a use for psych drugs. However, most of them
have a small benefit and tremendous risks. Patients need informed of this and this doesn’t happen in 15 min appointments. Furthermore, most providers are not aware of how severe these risks are. 1/2
Hey
@Lufthansa_USA
your flight
#LH429
had CO2 readings in the 2000s ppm throughout this long flight which increases the infection chance many fold. Why don’t you have clean air in your aircraft? You don’t want to keep your staff and passengers healthy?
If someone understands why
@US_FDA
approved a medication that increased 6-fold the suicidality in CHILDREN please let me know because I do NOT get it. At all.
@CDCDirector
@HHSGov
You cant improve long covid if you do not decrease covid cases - and for that you are actually worsening the situation. So much hypocrisy
During all my years of training, I saw the common practice of prescribing atypical antipsychotics for the elderly hospitalized demented/agitated patient. Nobody ever mentioned that since 2005 there is a FDA black box warning to NOT do that until I discovered it myself
This is correct. These drugs have the potential to devastate lives due to severe withdrawals and they only work 10-15% of the time for a short duration. Your body gets used to them fast. They need to be used only for severe cases and for a few months
I went to a talk earlier this week by two psychiatrists who joked that, if they told patients all the risks of SSRIs and how they scarcely outperform placebo, nobody would take them. My sense is this is pretty much an open secret among professionals.
@tmprowell
Me neither but wait for it: what if prospective employers do not like your mask? What if your academic colleagues miss you at dinners? What if they label you as “crazy” or “hypochondriac”? The repercussions are often real
@AdeAdamson
@adamcifu
Do you really think that patients not feeling safe anymore in the hospitals due to the mask policies is something to be proud about? I don't care about your definition of "reality". I care about what makes sense. And respecting vulnerable people makes sense to me.
What is a difference between a patient and a child in California with COVID? The patient has to stay locked in the hospital room, watching people entering in full gear. The child on the other side can go to school after one day! Incredible
#COVID19
Antidepressants can change their side effects over time. Just because your patient did not have any side effects for the first 6 months, it does not mean that new SE won’t arise later
"Since August 2020,
@PutrinoLab
, director of rehabilitation innovation at Mount Sinai, has helped treat more than 3,000 people with
#LongCovid
... [only] about 15% to 20% report full recovery."
Let’s assume you are on the 3.5% of people that developed long covid despite vaccination. You lost your work and agonize over the well-being of your family. Then you open social media and you see professors minimizing the harm despite the data. How do you feel?
I don't think MOST people need to be testing for COVID.
But, since they are, I find it really interesting to watch the evolution of the clinical syndrome over the years. My patients' current "wave" features a lot of lingering nasal congestion.
@elle_carnitine
it is no that, it is that energy disorders are not really taught at all in med school. Thus all doctors believe that “push” is always good
This is indeed a serious issue. The US academic system has pushed the beloved, well-rounded, super knowledgable clinician educator to the brink of extinction. It is all about grants and papers
"The needle would move forward more efficiently when academic medicine equally recognises... clinicians... who dedicate their careers to honing their skills and... impart their wisdom onto the next generation of physicians"
Art of Medicine by
@THilalMD
@SacksDisa
@CDCgov
@CDCDirector
of course we do. Covid is more deadly than any other virus and disables 3.5% of people for a really long time. And yes they need to isolate or wear N95 masks to not spread it. There is also treatment for the right people
How MDs think:
-A thousand patients complaining about a drug -> anecdotal
-A person writes down and publishes the same exact complaints -> Data
-FDA puts these complaints on the package insert -> SCIENCE
Following our lively discussion on
#stress
and mind-body connection when it comes to
#POTS
or
#LongCovid
, here is my take on stress and some pointers to other physicians dealing with complex patients:
#MedTwitter
#NeuroTwitter
✔️ Stress is an important trigger for any chronic
@Azeem_Majeed
I understand what you are saying but you have to be careful when you dismiss concerns, often patients with lived experience know more than the “experts” on side effects of treatments
@NeurologistMom
The most infuriating thing is that we know that recovery is possible and instead of working towards that we lost decades from people enjoying blaming patients
@AhmadRehanKhan
She didn’t say they are a myth, she said that they are constructs, criteria we use. That it is not objective like cancer or anemia. This is a fair argument you can chat about. And shutting it down with labels only shows that you are afraid of something
If your provider informs you about side effects and then finishes with “but these are rare” or “but I have never seen them myself”, they say it to give you an idea of the odds of developing the side effect. It does NOT mean that it will not happen to you
@ParianteLab
@guardian
they are not “addictive” but they make you dependent on them. You need to take them to not be ill due to withdrawal effects. Pharma convinced everybody that withdrawal lasts a few weeks but unfortunately it lasts months to years
Reasons to test for covid:
1. You don’t want to spread it. If you give it to 30 people, 1 will get long covid
2. There is treatment if eligible which might decrease odds of long covid
3. You will need the positive test for trials and insurances if you develop long covid
Do you ever wonder what “abnormal blasts” on flow cytometry mean on day 14 bone marrow? Well we looked into this and they have poor prognostic value for progression of disease! Thus, you do not have to re-induce, wait it out
@inkblue01
I think that every person has a breaking point in their immune system and after the X infection they start getting them more and more frequently
@ENirenberg
I have seen numerous people that are constantly sick after their Omicron infection.
@ChrisCuomo
has the same thing. You can wait for the prospective controlled cohort study to be convinced but this study would be quite hard to do.
You might have been on an antidepressant in the past and had a good experience. This does not mean that you ll have the same experience when you restart it. Many patients complain about severe side effects the 2nd time. Reason likely being prior withdrawal injury
as you can imagine this does not end up well. Maeve died. If they had provided her with feeding support she would have had a chance to recover one day. The result of the trial was “nothing wrong happened, there is no approved treatment for me/cfs anyhow”. Scandal 3/3
@DavidSteensma
Are all these fellows really better than the best fellows in all the other programs? what drives this kind of behavior? MD Anderson does top-notch research with people from all over the world and tremendously more diversity
@TimesONeill
I wondering why nobody’s posting this photo of Whitney in December 2016 I took the picture. you have his & my permission. I’ve sent it to you. It’s what Sarah & Maeve saw so they knew that tube feeding was possible. The red is from ice he put on his stomach.
Very sad example that medical gaslighting can even cost lives.
#Akathisia
is a common side or withdrawal effect of all psych drugs and providers should know about it
We've been criticized for claiming
#akathisia
is often misdiagnosed as a functional neurological disorder and that this can cause significant harm and increase the risk of suicide. To those who doubt this is true, please see the following posts taken from a support group.
@healingfromlc
I wear a mask everywhere and I am an MD. Stand your ground. State the obvious: you are a person with fragile health in the middle of a covid wave
@StevePhillipsMD
I never claimed the vaccine has no serious side effects but to blame impaired immunity to a vaccine taken in 2021 versus a virus that has infected people repeatedly over 4 years is a bit of a stretch? People want to blame the vaccine because if covid is to blame it is terrifying
@Doc_Valerie
@tessfalor
Deep down all doctors want to help. The system though pushes some to their limit. If they have to see 25 patients , 5 days per week, there is no time to think outside the box and read some more. We need to do better system-wise for this to improve
Functional implies psychogenic which it is not. ME/CFS dysfunction lies in the mitochondria which are unable to utilize oxygen properly leading to oxidative stress and multiple system dysfunction
Zach has made his life goal to gaslight me/cfs and long covid patients. So bizarre
The answer is multidisciplinary rehabilitation. PT, OT, ST, and psych. There is zero evidence to support pathology in ME/CFS that would make it impossible to re-learn to chew and swallow. It is a functional symptom which is 100% real and treatable with the right treatment.
I was not either. But once you join any patient support group it is all there. Thousands of examples. And
@markhoro
has done a great job tabulating it in literature. Also
@taperclinic
has many interviews on harms
so they look for something and they found nothing. Then they assume it must be psychological. They refuse to educate themselves on a new frontier. And while this plays out they don’t provide tube feeding to the patients 2/3
We are happy to share our new meta-analysis on lenalidomide-induced SPM published at
@TheLancetHaem
. Although clearly not easy to understand why, this data supports that lenalidomide only drives SPM in MM patients.
It is very hard for chronically sick people to become doctors and this had led to underrepresentation of such experiences in the field and less understanding of patient experiences
Classic unfortunately. Even a tiny dose of benzo needs a LOT of time to get off and SLOWLY. Otherwise you give your patient a long-term brain injury that they will have to fight alone because no-one believes them. Same story again and again
8 years ago yesterday, a psychiatrist took me off 1mg Lorazepam abruptly. 6 days later the gates of hell opened & swallowed me whole. He &his office never believed me, never read 1 medical journal article I gave them &only saw my symp through the lens of the PTSD.
#psychwtitter
@ENirenberg
I am not aware of other viruses weakening the subsequent response to other pathogens apart from these two. Of course they are nothing alike, but this a similarity
Anyone that prescribes psychotropic medications should listen to
@markhoro
on this interview and buy the official NEW Maudsley de-prescribing guidelines. You cannot prescribe without knowing how to de-prescribe
Warn any patient you put on antidepressants that they might be affected by permanent sexual dysfunction and anhedonia even with a few doses. Well-recognized by European regulators but the
@US_FDA
has been dragging their feet for decades