The treatment of Severe ME patients in NHS hospitals

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[@begr_wiedererkennungswert]

Thank you for finding the right words, again. Sometimes they are terrified girls and boys, not even adults, who beg doctors to not torture them to death with their 18th century pseudo-psychotherapy. They plead that their doctors stop to harm them. Then there are petitions, people collecting signatures - please have a look at the guidelines, please listen to an expert - maybe there are a few press articles. Then nothing happens. Some even deteriorate so much from the treatment that they die. It’s like an alternate reality of gruesome antiscientific medieval age superstition, where you can get sucked in by accident any time, but can never get out, and where rights, human life or science have no meaning at all. I’m sharing these emergencies on Twitter, but I often really don’t know what to say. It is too much.

[@buzzukfiftythree]

In my experience, it’s the pretty much universal disinterest that doctors display whenever one says “I have ME/CFS” that annoys me the most.

[@suzannewman979]

I know hospitals can be extremely dangerous. As a nurse that has worked in many different specialties I praise you on your service for others with ME. Bless you kind, sincere, and strong human being always working for the good of humanity.

[@_amalfitano]

This is horrifying and baffling. Thanks for speaking out about it. I appreciate the irony of needing to protest but being unable to.

[@VladVexlerME]

Planned to go but just wasn’t realistic today! This is a recurring story.

[@lkyuvsad]

It's often the case that our care needs are so overwhelming that immediate family also don't have the resources to protest or advocate, because they're looking after us. This is compounded by the heritability of ME/CFS, which means carers often have more than one loved one to attend to, at which point there's very little space for anything else in life. It makes it quite hard to be as visible and noisy as is required to motivate change.

[@erinmac4750]

​@@VladVexlerME I can relate. I have what is being defined as idiopathic hypersomnia, meaning that the doctor doesn't know the cause. It's affected most of my adult life and does foil plans at times. It's good to see people in the UK standing up for patients rights. I'd love to see medical rights be seen as a human right here in the US. You're doing good work, friend. Much thanks for the inspiration!💜

[@barbarad1986]

Such a frustrating disorder. It is so good that you can use your platform to educate people about this and advocate for research and better care

[@antlerman7644]

You are a really passionate and articulate man. Thank you for being a good role model for being honest to your values, but communicating clearly.

[@VladVexlerME]

Thank you.

[@DarkestAlice]

Thank you, Vlad, for making also non ME patients aware of this horrible health condition. I do hope that ME will be taken out of the psychiatric sphere altogether and that more research on ME/CFS will be funded to finally help people who are experiencing avoidable pain.

[@VladVexlerME]

Thank you so so much dear you.

[@DarkestAlice]

@@VladVexlerME Shortly after my post, the Austrian Association for Neurology confirmed after their consensus conference that ME/CFS is a physical condition and should not be typified as a psychic one, which must be recognized by our health system. One little step...

[@Astro_Guy_1]

It is appaling how many hospitals are completely unequipped to deal with unusual/uncommon illnesses.

[@VladVexlerME]

Really a disaster esp given how common these “uncommon” illnesses are

[@lkyuvsad]

@@VladVexlerME more "untaught" than "uncommon"

[@josedariopinto3728]

Thank you for adding your voice to speak about ME/CFS.

[@marijo1951]

I read about Carla in the Canary and I saw the heartbreaking video, released with her family's permission, in which she is so distressed by the light coming through the window in the door, her father pleads with the nurse to have it covered and the nurse totally dismisses what he says. The arrogance of medical and nursing staff who reject both the express wishes of the patient and the recommendations of NICE, which by and large acknowledge the reality of patients' claims, is breathtaking and shameful. I hope immediate changes are made in her treatment and that the mistreatment of people who are suffering this appalling illness ceases quickly.

[@VladVexlerME]

It’s can feel like pushing a boulder up a hill, making these changes - but we will make progress eventually. The trouble is all the people for whom it will be too late.

[@automaticjoe1]

Having lived in Canada for a decade and now living in the back in the US, I can say that in government run systems it seems like the system is a one size fits most situation. It’s when you become an outlier so to speak that it becomes very problematic to get the care that you need. I myself still have problems here in the US. I was misdiagnosed with type two diabetes and I had to buy my own lab work, which is legal here in the US to prove that my intuition was correct. I actually have auto antibodies which means I have type one and type two treatments aren’t appropriate. In fact they can do real harm. But I would never have had the proper diagnosis had I not been given the opportunity to advocate myself and bypass the system, and then present the date back to the system to say rediagnose me and fix the problem. Sending my support your way!

[@lokestrange]

Carla deserves infinitely better. Everyone with ME does. Thank you for spreading awareness about her, hopefully this can start the wake-up call process with her medical staff. Like, I get why people think being in hospital ought to be The Place To Be for folks with severe ME, but hospitals really aren't that place. Neither are nursing or convalescent homes. They should be, but they're not. There's too much noise, too much activity and often too many complex factors at play for their medical care team when treating an ME patient. Being treated for chronic conditions, like and unlike ME, tends not to go well in a hospital setting, IME. They look for the simpler, more easily defined symptoms to manage. Not what symptoms needs to be handled with the utmost care, like sensory intolerances. On one hand, I'm grateful that channels like Dianna's (Physics Girl) exists. Her loved ones make a point to show the reality of how debilitated she is - people need to see and know how severe ME impacts others. On the other, watching her channel angers me. Not because people aren't doing right by her, her loved ones do seem to be doing right by her and so are people in the comments for the most part. That she needs - not wants, outright needs - so much medical care and this burden is largely left on the people who love her most makes me livid. I understand why they're taking the bulk of the burden in terms of her care - nobody else is going to. Dianna needs more care than people who care for a paycheck can deliver. Leaving it up to certified doctor-people is not likely to end well for her. That breaks my heart. Doctor-people and medical settings should be safe. But they aren't. Not when your needs are complex, chronic and difficult to gauge on the surface.

[@ruthherring5684]

Wish I could give this 100 likes…. SUCH an important issue!

[@VladVexlerME]

Thank you so so much, you just did in spirit.

[@andrewgifford7740]

Hi Vlad, thank you so much for continue to highlight how ME/CFS sufferers are being treated once in hospital at the severe stage. So grateful for all you're doing!

[@philippac4710]

It is so astonishing that despite the new NICE guidelines and new research findings, nothing seems to change on the ground. The care patients receive is just as bad as it was 30 years ago. In fact, due to all the NHS cuts it’s probably worse. I worry that nobody in authority wants to face up to the situation for fear of litigation from those of us who have been treated so neglectfully in the past.

[@VladVexlerME]

It’s really 19th century stuff!

[@ruthherring5684]

There seems to be a widespread prejudice in the healthcare system (and society as a whole for that matter) I have a feeling that what scientists are discovering about ME is not being adequately communicated to the Doctors, nurses, OTs etc on the frontline. It’s unfair to the healthcare workers, as well as putting ME sufferers into desperate situations. - Or is it that people are disregarding and ridiculing that scientific evidence due to their preformed views about ME?

[@philippac4710]

I think medical professionals do mostly seem unaware of research findings but they are also so brainwashed into believing the illness has a psychological cause that they see no need to read up on the research in the first place.

[@danwylie-sears1134]

I have a brother with cancer, in remission after treatment. The way hospitals function seems to be designed to enable staff to do what they need to do in order to avoid foreseeable, recognizable problems. That makes sense, but it's not the same as being designed to support recovery. They had to monitor him, because cancer treatment can have severe effects that have to be dealt with promptly in order to avoid life-threatening complications or permanent impairment. But that meant he wasn't getting as much sleep as he really ought to have had in order to recover both from the treatment and from the damage that the cancer itself had done. A disorder involving sensitivity to light seems as though it would make the conditions in a typical hospital harmful instead of just suboptimal.

[@adamkolencik5186]

Thats so sad to hear, hopefully this will move in the right way and the people who need the treatment and help will get it, fully. Respect to you, friend, for sharing the message and speaking on it, kudos.

[@eddiegoodman9267]

Prayers

[@CaroAbebe]

Is this ever going to get better 😢 Only recently, I watched a UK documentary on ME. It was so bad, but that was from five years ago! However, I’m glad to hear quite a bit of energy in your voice, Vlad. Lots of love ❤️

[@VladVexlerME]

Lots of love and gratitude!!

[@corabrooks4337]

Im sorry too hear of the lack of care this young lady is or has been treated by the NHS and maybe yourself. However if you where receiving or trying to receive the same service here in Ireland as a public patient. Well can I just say in my case, I may have been waiting years unless it is diagnosed as an emergency. I have had to obtain private insurance to keep me alive even for a basic 24 hour stay as an inpatient as an gallbladder removal patient. This surgery turned into a 10 days 2 operations with inpatient care, which included intensive care. As I have been dealing a brain stem C1-C2 with several surgeries, with several regrowths 5 operations with a fusion, I still have not received an appointment for an MRI scan at a public hospital that was made over ten years ago or an appointment for a gallbladder specialist made 2 times over 2 years ago again to a public hospital. I am lucky as my children have been paying for this insurance for had they not I would have died due to the lack of public care also the lack of hospitals in Dublin Ireland. Everyone in the UK be glad of the NHS for all accounts it is still a highly efficient machine with only 4 to 6 hour emergency wait ours over 24 hour or more sitting on a chair or trolley, even with broken legs sorry just a recent event with a friend aged 65.

[@jaculton2641]

When is this going to end Vlad. How is it going to end? Is this contuing hell only being perpetual to save reputation damage?

[@VladVexlerME]

I wouldn’t underestimate how far people end up sincerely believing what is convenient for them to believe. That’s true of the BPS gang.

[@kasoca77]

Thank you for spreading knowledge about this!

[@eileenc.1568]

Hospitals have been abusing patients with severe ME for decades especially children. I have witnessed the ignorance and lack of help and indeed prejudice against the ME suffers and I have empathy for those at the mercy of such ignorance.

[@gregorkielland5651]

Its an utter disgrace

[@jessicarowley9631]

This is both terrible and terrifying for anyone with ME/CFS. It is straightforward prejudice. It must end now!

[@VladVexlerME]

💛

[@ruthherring5684]

So agree.

[@buzzukfiftythree]

Many thanks as always Vlad for highlighting the difficulties that we ME sufferers experience in our dealings with the medical profession and for highlighting what is an incredibly challenging illness to deal with. I'm just so very glad that my ME has never been bad enough to need in-patient admission. I've had it for decades now (finally diagnosed in 1990 after years of banging my head against a brick wall). My own GP is excellent in all other areas, but like so many, she has a blind spot where ME/CFS is concerned. I see her eyes glaze over whenever I mention it. I've had excellent treatment from the NHS for any other co-existing conditions that have cropped up over the past 30 or so years, but soon realised that I just have to manage my symptoms as best I can and function within the limited parameters of life with the condition. It can be terribly depressing, both in dealing with the wide variety of symptoms one has over time, and experiencing the negative reactions of doctors. In spite of the NICE statement, so many doctors just don’t take any notice of them or just don’t take the trouble to read the latest research.

[@DJWESG1]

Friend of mine had problems his entire life, fed all sorts of meds over the years.. turns up one day and the Dr tells him the nhs got wrong all these years and are sorry for fuqing his whole life up. He didn't even sue them because they were doing their best. However, I feel it goes deeper than what's on the face of it. Beit the acceptance of ppl with conditions, beit the difficulties in acknowledgement of conditions, beit the diagnosis/prognosis and even the meds.. The prime function of the tory party is to smash the state, make ppl hate the state, make the state something that can't be depended upon. How will they achieve this ideological goal?? Is it not obvious yet?

[@pdjhh]

Sorry for your suffering and those with the same condition. Unfortunately the nhs is fd and they don’t look after anyone properly anymore. Not the staff’s fault.

[@ChiarelOD]

Thank you so much Vlad 💛

[@kimmcdonald1096]

Thank you 🙏

[@lindemama]

Thank you for highlighting this 🙏

[@sparklingsoda9989]

thank you for bringing our attention to this 🙏 it makes me angry to hear. I hope things will change

[@VladVexlerME]

Thank you so much.

[@NikkiOwen]

Thank you for talking about this Vlad ❤ 🫂 I have been following Millie's case in absolute fear and horror! Millie is 18yrs old and in the Royal Lancaster Infirmary. Ellie Fry, a journalist for the Mirror has done some excellent coverage of her case and is working with the ME Association (MEA). Hopefully soon there will be a clinical protocol put in place telling HCPs how to care for severe ME sufferers. Ideally a protocol should be adopted nationwide but I know from my own former clinical practice that different hospitals have different protocols and pathways for many conditions and NICE Guidelines are not always followed because they're 'just guidelines'. Some medical personnel baulk at anything that they can say is 'not evidence based' but there's only one way to get evidence! We like to pride ourselves on 'best practice' but if accepted practice has such awful outcomes, it cannot possibly be the best that can be done. Desperate prayers for M 🙏 Thanks again 🫂 ❤

[@bitegoatie]

I wish this were a problem solely of NHS or even one particular to getting care for ME. The issue would be terrible enough if that were so. Alas, in the U.S., we lack a single neck to strangle when treatment problems arise, and we have essentially no widely recognized guidelines for the hospitalizing and care of ME patients. More, psychologizing ME (or, as doctors tend to refer to it here, "chronic fatigue") remains more or less the norm. Then again, the medical community worldwide reaches far too readily for psychological explanations when patients turn up for help with complaints that are not readily ascribed to well-known health problems. Mental illness is a real issue for people, of course, but we see things having no obvious connection to mental illness, emotional distress, or inappropriate patient or caregiver expectations being rerouted toward psych or social-work consulting, simply as a matter of either frustration, misplaced skepticism, or lack of time on the part given physicians. This should not happen, but we have a culture of dismissal entrenched in medicine, even for illnesses that are in fact fairly well described, like ME, and that have growing, if small, communities of expertise on which clinicians can - but frequently do not - draw. Leaving it up to sick people and their caregivers to advocate for change on this problem is unfair and doomed to failure. In the best case, experts would advocate for such changes and they would have activist support. Activists for change in healthcare tend too often to be people who are already sick, however, and who therefore already face hard limits on how much pushing they can do. Sick people typically require care and treatment rather than to-do lists for bettering society. People looking for causes to champion have no lack of options.

[@user-yf6nd4sn3k]

I'm a hospital porter and probably someone who has put people with ME through some of the experiences spoken of here, when moving people from beds to hospital trolleys and from trolleys into scanners I'll certainly try to get an overview of ME after seeing this so I don't put anyone through that, but let me give a little insight and opinion. - Perhaps the majority of practical caregiving in hospital (cleaning, feeding, toileting, dressing, moving and any other basic you can imagine) will come from auxiliary nurses, generally people who are competent but with little to no real training who are kind of your ward dogsbody. There might be one of these to 6-10 patient's, though they will often be called away to help elsewhere. There will be a nurse for 12-20ish patients. Assuming the ward does not specialise in ME and similar (lets say the specialist ward is full and the patient is in a general ward) that nurse will likely have a general idea of ME and know a few key points in observing and treating the most critical aspects of it. The ward doctors will have a more in depth view probably approaching the level of understanding it would take to reliably meet the needs of keeping someone with ME in good care. The consultant docs will likely have a pretty deep understanding of the more cut and dry medical aspects, and a reasonable grasp of the more diffuse implications for that person's care. The financial pressure the NHS is under means that staffing is kept at such a level where in many cases the staff are only just able to meet the most basic needs of the patients, keeping them free of bedsores, fed, toileted, stopping them falling when moving about, helping with moves to scans/appointments and cleaning up piss, crap and vomit. To illustrate, let's say I as a porter have been tasked with going to a ward to get a patient to a CT scan, I have been told they will need a trolley, so I assume they have mobility issues. I go onto the ward, there is nobody at the desk because they are on the phone to somebodies relative trying to arrange them going home, I go to a whiteboard to find the patient's room number, I see my first medical staff, an aux nurse walking at pace with a new bedpan (a patient is likely about to shit the bed), no use asking them. So, aware of the tight time I have to get this person to what I assume is an important scan, I go to the room, knock, enter, tell the patient I am here to take them for a CT, the patient (perhaps assuming that I am aware of their condition, or perhaps not wanting to be a bother as they are aware of the obvious stress many of the staff display) says "ok", I ask if they are OK to step off their bed and on to the trolley if I pull it close, they look unhappy but agree. At this point an aux nurse enters, aware that in the next room there is a man with dementia who tries to get out of bed all the time (fall risk), this aux nurse is likely about 20 and has been here 6 months, it may have been mentioned to them what the patient's condition is, but aux nurse has no education in this, one step above a layman. They have met this patient briefly a few hours earlier while refilling their water jug. The aux, clearly harried, asks the patient to get up on to the trolley. The patient clearly in pain, with help from us, gets over to the trolley, I make them comfy and we leave the ward. Only in the lift do I find out in conversation that the patient has ME, which my only knowledge of thus far has been through general osmosis. (If I had formal education or training in such things I likely wouldn't be working a £13ph hospital job). Sorry this comment is all over the place but I'm on my phone with a toddler clambering over me. Hopefully it illustrates the situation in hospitals and why the level of care is so poor, it's horrible and dehumanising for both patients and staff in my opinion. Leads to the compounding issue of the more conscientious staff leaving due to the stress of being unable to give anything near adequate care for patients. It selects for those who can switch off their empathy, strip a bed, clean an arse or haul a patient out of bed with only the barest most dead eyed explanation of what's happening and why. Much love to you Vlad and everyone else suffering from poor health.

[@RileyH-fh8vf]

I don't have ME but I do have two serious health conditions, so I hope you will view my comment in the spirit it is intended, as I am responding from the U.S. and we don't have a NHS model here. I wholeheartedly feel your concerns about ME patients and care givers being stuck between a rock and a hard place, and the abject abomination of the NICE guidelines for ME - that are already in place - not being followed. Medical gaslighting, whether intentional or through ignorance, appears to be a universal problem. I have seen a total of five different physicians (two of them specialists) and the only thing they talk about is drugs, and then more drugs for side effects caused by the first drugs, etc. NOT ONE of them has ever talked with me about diet, or about how diet affects neurological or mitochondrial disorders, or about what is known as functional medicine, the latter about which they are as ignorant as the man in the moon. They don't stop to get into all that because a doctor's office visit is standardized to be only 7-12 minutes, with back-to-back patients, and so one feels hurried through. I did my own research on these subjects and radically changed my diet. It has substantially improved my conditions, has kept me to a bare minimum of drug therapy, and I dare say the changes have thwarted other, potential health issues as well. I wanted to share this information for what it's worth to help others. Prayers going up for all those suffering with ME, and prayers going up that the NHS will be made to seek advice from ME specialists, instead of specific ME protocols being disregarded in favor of an easier or hurried route.

[@suzannstrohmaier2578]

Here in the states we always idolize the UK and Canada for their health systems...I am sorry to hear they are not as good as we assume. I have also seen some new from Canada about serious issues with their system as well. California does very good offering health care to all people here. By law we are required to have health care...so California fills in the gaps. But I suppose in all societies healthcare comes down to money...rich people can always access services....but for middle class/working class it is more challenging. Sending warmest wishes to all folks out there dealing with health issues...it sucks to not have easy access to medical care when one is already dealing with health problems. 🙏 🌻🌻

[@VladVexlerME]

The UK public health service is in many ways far behind that is the less we let by European counties. My central and east European friends in U.K. just travel back to their countries for healthcare! It has really fallen far.

[@harrynac6017]

In case you don't know: At this moment there's a very informative live stream going on about ME/CFS and long covid on "Physics Girl". This will be all day long. Read the description accompanying the stream.

[@SlpBeauty333]

The red thread that I wove into that tapestry? It was red? That one was for all ME patients. I hope you all get relief soon. That tapestry bit happened because I was at yet another useless medical appointment. I try to treat myself afterwards? I went to the Cathedral and the yarn that was there? That yellow? It was literally "Vlad's couch yellow"! So I put in one for him but the other ones? They were for you. You are not forgotten. I'm so sorry I haven't been able to film walks lately but my Dad is sick and I'm filming him instead. I will try more because if I have to go to the doctor? I'm dragging all of you along for the treat part! Lots of love from NYC ❤️💛🌻

[@begr_wiedererkennungswert]

No pressure for New York Film Noir, take care of your dad, and all the best to your dad. 🧡

[@suzannstrohmaier2578]

I hope your dad gets better very soon.🌼🌼🌼🌼 I love NYC...I haven't been there for years...I just remember one time trying to figure out the subway system. 😅 I thought since I used the subway in Chicago...it would be easy...nope...the NYC subway is huge compared to Chicago..and our train system here in SF Bay Area...is super small by comparison. I stayed in Brooklyn Heights with a friend doing her internship in NYC and I stayed with another friend in Jersey a couple times...I could never afford NYC hotels. haha

[@SlpBeauty333]

@@begr_wiedererkennungswert LOL, I love being NYC Film Noir! Did you ever figure out why that one video was such a NYC thing? I can't believe it's almost been a year since I posted that and I still don't have a replacement for my pain doctor! My Dad is doing really well, I really should put a separate post about it because he's in a research trial? OMG the difference in level of care is otherworldly until you experience it first hand. And I hope no one else needs to go through some of this because it sucks is the understatement of the millennium! Lots of love from NYC ❤️

[@SlpBeauty333]

@@suzannstrohmaier2578 Yep! The subway can be really hard to figure out especially if you have a connection to make. You never know if you're going to have to walk very far or not. I think someone called it "getting ready for the subway Olympics"? Pretty accurate actually! There are affordable hotels but the ones I used to use were in Chelsea. I had a foreign boyfriend and one from Chicago and I booked a hotel because I was in the suburbs at the time. They still exist but this was before the Highline went up. There's still some hotels out there that are $150ish per night which in NYC money is pretty cheap. But I also earn a NYC salary so there's that. You and Julia need to come back over here and help me get my garden done! Zone 6b, signing off! Artur Rhei was just in NYC recently and he freaked me out because he was smoking a cigar downtown in a park? You can't do that here! Then he went to protest at the Russian consul? He went to the one in Queens. That's where the Russian mob hangs out. He nearly gave me a heart attack! Thankfully he's alive and well and in Estonia. I'm very far behind on my Internet because this working for a living thing really eats up time!

[@musiqueetmontagne]

Unfortunately this isn't just prevalent with poor ME sufferers. The standards in the NHS have been sliding for decades as it gets more and more politicised and the agenda has become more about the NHS and it's employees than about the patients. It's staggering how much money is spent for a poor service in many areas. Most other developed countries now have better results and prognosis in many areas such as cancer and cardiovascular disease. Scandalous.. 😡

[@Focke42]

❤

[@simonpkershaw]

Absolutely stand with you and all with ME & suspected ME. I used to think it all worked, but I really don’t anymore. As someone who was vaccine damaged in 21 & meet all the guidelines for ME but can’t get anywhere, I’m appalled at the way the NHS works in practice, the ignoring of some guidelines, the ignoring of patients the utter ignorance, I have every sympathy for hard pressed medical staff, but NHS leaders need kicking from one end of the room to the other, it’s not good enough, this is the 21st century not the Middle Ages

[@DavidJBradshaw]

It’s time Medical Gaslighting was criminalised in the same way other forms of discrimination are.

[@VladVexlerME]

It just needs to stop.

[@jamesclayton3388]

I think our NHS could learn from our European neighbours?.. It is vital that the service improves.

[@renater.540]

Dear Vlad/Dr. Vexler, today I accidentally found a Neue Zürcher Zeitung article on the 2024 ""Unite to fight" conference. Would you mind publishing your opinion on this event? I'd love to hear your statement. Thank you and lots of love! PS : not knowing how to reach you otherwise I chose this way of contacting you.

[@andrewworth7574]

Don't expect good medical practices in public hospitals if the injury or illness is more complex than a cut finger or head cold.

[@beatonthedonis]

Don't patients with gender dysphoria also deserve to have expert-led, non-psychiatric treatment as well?

[@SlpBeauty333]

I'm currently taking care of my Dad who is in a cancer research trial at a NYC hospital, Weill Cornell for leukemia. After about 13 weeks his blood was turning normal and he's still doing really well. I realized that I really should share this with everyone here. I have an autoimmune type of arthritis, I've had breast cancer twice, a neck injury from one cancer biopsy and I have anxiety disorder. Basically I'm ME's "equal yet opposite reaction" in terms of energy. Sounds great until you realize that this combination means I cannot sleep! I can summon adrenaline and override any type of tired. Physical pain is almost constant and sometimes it is predictable, other times not. I've had this arthritis for over 13 YEARS now. My Dad is almost fixed from Stage 4 cancer in 13 WEEKS?!? WTF. WTELF. The difference between the care my Dad is getting and what I was getting is ASTOUNDING. I don't even think that's dramatic enough to explain how different it is when you have an actual research physician working with you. I think you actually have to experience it first hand and I really hope you all do get that experience because you deserve it. Here's what it's like: My Dad gets to the hospital, his blood is drawn, the results are available within about 15 minutes and we're in the exam room. I'm taking notes and keeping track of questions. The doctor and his team are there and they get my Dad's monthly medication and log. Then we go out for pizza and NYC tourism... even though we're native New Yorkers! It's so infuriating to see sometimes because I am a PhD like Vlad. If you're not an academic, the difference might not be obvious. A Master's is a professional degree like an accountant or lawyer. A Doctoral degree is a research degree. The main difference is the Master's degree people think they know everything. The Doctoral degree people? I know exactly how little I really know and every problem that I don't know the answer to is just research waiting to happen! The mindset is so very different and if you're not an academic, it's not obvious what the difference is and it's a big part of why treatment is so drastically different. So why are people with Master's degrees called "doctor"? Because they stole our title in the 1600s to make themselves seem less like butchers and more academic. FFS "doctor" is Latin for "teacher", as in a research professor. So not only are they not treating me properly medically, they're using my title without the right degree! Even at teaching institutions? I outrank my medical people. I'm a tenured Associate Professor. They're only Assistant Professors. Fortunately Dad's doctor is an actual doctor and he recommended a new research rheumatologist for me. It's a night and day difference. It really is. I hope everyone out there who is suffering with these misunderstood conditions gets to real, top notch care ASAP! Lots of love from NYC ❤️

[@aliyachaudhri8206]

Mental health as she grew up in a cult.

[@mikebon8352]

All tax money goes off to Ukraine.. so thus do not complain...

[@VladVexlerME]

I am happy. But you can’t be happy making political points on the back of critically sick people. That’s not conducive to your happiness.