The multi tasking thing is something that I think explains why certain tasks are so difficult for the patients. I can’t sit through a zoom meeting without getting a crushing headache in the first 20 minutes. Same if I am driving, trying to work on college assignments. I’ve been ill for a decade and I’m still gaslighting myself “it shouldn’t be that hard” thank you for explaining why everything makes me so sick.

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.

surely this is a mitochondrial disease? somebody must be working on how to cure viral infections that damage mitochondrial function? It could be lots of things sure, but this seems the most likely - I'm just an engineer so what do I know?

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!

Very helpful. My outlook on the chronic daily pain is often not good. On the bad days like today I yell out when the pain strikes hard. Yes, 'dancing with it' is a good way to cope with it. On those days I try avoid making a lot of pain if possible, and figuring out what i can do that day to still enjoy it. It means that planning much is really most likely a far-fetched idea.

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.

Longcovid has some similarities to ME but it is a different disease. ME is caused by enteroviruses.

Had this happen at university in a Maths III tutorial after being asked to answer a simple question. Blank, mind blank and complete confusion. Muddled though the rest of the year, failed out of uni. I found conventional medicine unprofessional with the casual and dismissive approach on ME/CFS. Took decades to figure out a path to reasonable life. It came and went in cycles. Some years were better, others bad, and a few very bad. Things improved when I committed to learning a lot about what works and what doesn't. 2022 was "annus horribilis" year from a storm of internal and external factors. Applied what I learnt and by 2023 was in slow recovery, 2024 is much better. Every testimony adds to the weight of evidence. Thanks for sharing your story.

I think i inferred a good amount of your first two points just by your other thumbnail about illness and happiness. I'm into my third week of Shingles (child's play really compared to what so many endure) but nonetheless I'm grateful for the way that thumbnail got me to the realization I was approaching thanks to other pain but wasn't quite there. You are a multifaceted blessing Vlad. Warmest of wishes, hope you're doing ok. <3

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 ❤️

Mental health as she grew up in a cult.

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.

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.

Sickening this cruel design of our bodies it trully is all these copes one needs to find just to deal with pain....I know 100% that our bodies is designed with PAIN and MISERY. Why? Well just look at this you take drugs right no matter the type of drugs you can feel very nice for a time being even if you have pain the pain goes away (it's drowned by the good feelings) this may go well for a year or 2 then you need a higher dose correct? So you do....but then comes a time that it will not work and you only take it to counter horrible withdrawel symptoms. So i realized that this cruel body CAN get USED to good feelings as if it says "enough of these good feelings screw you!". In the mean time this cruel cruel DEMONIC body of ours DUMB and try to ruin your wellbeing because millions upon millions of people have chronic PAIN and you know what the PAIN is exactly the same as day ONE and in year 20 hardly ANY difference. This evil body can't get used to PAIN but it can get used to good feelings.....Pain is a warning if you continue you may die correct? Well the proof is chronic pain what warning does this chronic pain has for us? NOTHING but misery! The body should come equiped with pain yes but the body should REALIZE ok danger is gone i can probably life for another 20 years "why should i make the HOST suffer more, nah i just end the pain signal and MOVE on" I don't care if this design is done through evilotion (evolution) or through a intelligent design by a single deity "God" or a group of CLOWNS. F you, you bunch of nasty wicked evil scum! Putting people under pain and suffering for so long! And don't get me started with "well god is testing you". What a rubbish idea. Would a loving father torture his child for YEARS and YEARS? Because lets face it some of these chronic pains are extremely painfull and may lead to the desire of ENDING your self! Trully a divine wonderfull body we have. It's WEAK it's packed with potential genetic TIME BOMBS that suddenly out of nowhere STRIKE when you are at your PRIME! I'm flabbergasted that people trully think that the body is something of wonder.....holy moly if you just knew. At birth you either dealt good cards or very very BAD cards!

Thank you so much Vlad 💛

We need biomarkers! A cancer patient would never be treated this way. We need proof that this is a biological disease.

Thank you for spreading knowledge about this!

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.. 😡

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

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

❤

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.

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.

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