ME/CFS Awareness Thread

Oh yeah, I'd forgotten. Had that one. Nowhere near so bad or so long, but it still kept me off work for six weeks.

Thing is, at least with diseases like that there is an end in sight. At least for the majority of us.

It probably also helps, in many small ways, that one blood test identifies one virus, and we have a definitive diagnosis in a day or two. This stuff may be less important to the sufferer, but it is very important to insurers, employers, state healthcare, etc etc.

 

I want to post more later when capable but please do contribute to the fundraiser if able, think of spreading the word if not. I know I'm hardly a regular but want to sign off as another member here with ME/CFS. Afflicted since 2014, severe(and diagnosed) since 2021. Lyme onset suspected. ME has taken my ability to enjoy music 96% of the time & as you might tell from my posts can make my senses unpredictable and my writing scattered. I feel a smidgen of guilt that some of my impressions over the years may be inaccurate; more reflecting hitting a cognitive wall & 'crashing' while listening than traits of gear.

The damage done by the ignorance surrounding ME cannot be overstated; be it how the medical community treats us or the harm we do ourselves prior to understanding what's going on(years of trying to brute force it away with diet & exercise in my case.)

 

I just want to bump this thread for those who haven't seen it yet. Don't worry, I won't do this forever, maybe a few times.

The Holidays are about giving in many ways and I believe a lot of people make donations to causes during the holidays to give back.

I don't discount the suffering of patients with other chronic illnesses or cancer or anything else, but every other chronic illness is well funded by the government and there is a lot of active research going on. ME/CFS Research is not funded at all by comparison. My father, Ronald W. Davis, PhD, is a world renowned scientist who paved the way for the Human Genome Project and the foundations for alll of modern Genetics. He and his research team figured out a diagnostic test called the Nano Needle, and a diagnostic test alone would change EVERYTHING for ME/CFS because right now there is no diagnostic test, which is part of what allows the prejudice to continue and allows insurance companies to deny necessary aid, medications and treatments.

I cannot drink a drop of water due to a paralyzed stomach (severe gastroparesis) and my insurance coimpany won't cover bags of IV saline. Without IV saline I would literally die in 3-4 days. But my parents have to pay out of pocket $14 per bag and I use 2-3 per day. This is just one example but it is beyond outrageous -it is criminal negligence.

When I could no longer walk, my incusrane company would not cover a wheelchair because ME/CFS is not considered legitimate an don't on their "list" of illnesses. I was crawling to the kitchen just to get food!

But even just a diagnostic test alone would stop this abuse from happening because it would legitimize the illness and these things would have to be covered by insurance.

And guess what? NIH refused to fund the Nano Needle diagnostic test for ridiculous reasons. It's just prejudice plain and simple.

We need to get a foot in the door to legitimize the illness so that the cogs of the system start to help us, but for that we need private donations from people like you.

If you can, skip buying a tube or piece of gear this holiday season and donate to my fundraiser.

http://spot.fund/FindACureForMEcfs2023

Thank you all so much!

Whitney

 

I'm not sure if I already posted this - scatter brain. I've tried transcranial magnetic stimulation and ket. IV treatment. I found value in both, but I can't afford to continue either treatments. Trust me - it's more than a pair of headphones. Currently on a bunch of random medications to alleviate the 'symptoms' - Lots of nerve pain for me - gabapentin doesn't really do the trick, but lots and lots and continuous massage, aware behaviour, and telling yourself you aren't done. Nothing diagnosed for myself, but keeping up with the medicine schedule. Heading to Meh-He-Co next week and stocking up on some of the Rx's.

Stay strong and positive. I also use the hobby as a crutch to keep it goin'

 

Is there a PayPal option? I looked for it and I did not see it.

 

Reading this all and I do not know how you do it. The past month ive had some medical issues where I felt a bit off kilter like I was a little drunk and not able to focus in on reality. It has been mentally draining. While I understand aspects of what your experiencing, I will never fully be able to comprehend the day-to-day life of you and others diagnosed with ME/CFS. Your strength is far beyond anything I could ever muster and I only wish I could do more. ♥️

If you or anyone else is able to share here, I would like to hear more about the early symptoms of ME/CFS. I am hoping that would further spread awareness or at least help others in similar situations.

 

Thank you @Deep Funk ! There should be, but you can also just donate to the Open Medicine Foundation directly. Just be sure to write in the order notes that your donation go to Ronald W, Davis, PhD's Lab at Stanford, because that's where the best ME/CFS research is happening worldwide and where your donation will have the most impact. My fundraiser is going to the Open Medicine Foundation, which will give the entire sum to Ronald W, Davis, PhD's lab.

www.omf.ngo/donate

I just checked and they accept credit/debit, Paypal, Venmo, Google Pay. and Bank Transfer

 

Symptoms, even early symptoms, vary from patient to patient more than most illnesses. I believe this is because ME/CFS makes a core bodily system dysfunctional, and as this dysfunction spreads through systems connected to that core system and then systems connected to those systems and systems connected to those (the body is a huge complex web of interconnected systems that all affect each other), it winds up creating different symptoms in different people depending on their genes, life experiences, what they've been exposed to (infections/viruses/mold, etc) and each persons's weakest systems get affected the most. I hope that makes sense. That isn't fact, it's just my guess based on a lot of experience and self reflection - looking inward intuitively.

But the major early symptom is a lack of energy, but it is much more severe than "tiredness". It is likely caused by every single cell in your body lacking sufficient ATP. It is a lack of energy where you physically hit a wall and cannot do more. But the hallmark symptom of ME/CFS is that when you push yourself to do more when you hit this limit, the symptoms get worse. This is unique to ME/CFS. Even common colds are often helped by exercise. With ME/CFS, when you go past these energy limits, all of your symptoms get worse for hours, days, weeks, or sometimes years or indefinitely.

They say if you have this kind of lack of energy and it persists for 6 months you likely have ME/CFS. And I should mention that "Long Covid" is really just ME/CFS caused by Covid. ME/CFS is known to be very often caused by a viral infection, often EBV/mono. The symptoms of Long Covid aren't all exactly the same as ME/CFS patients who did not first get ME/CFS from Covid, but that's because Covid has unique affects on the body to other viruses/infections/physical trauma and so the resulting state of ME/CFS is a bit different.

If you get Long Covid, or wind up with ME/CFS, the most important thing you can do, as early as you can once you figure out you have it, is to not over exert yourself. Stay within that energy limit. Because the best chance you have of ever recovering is to never push past this energy limit early on when you first get sick. There are known cases of people recovering when they are militant about never exceeding their energy limits - never pushing past them - in the early stages of the illness. The importance of this cannot be overstated. It is not easy to stay within your limits, but we are talking about a small sacrifice while the illness is mild and you can still be out in the world, just mindful of your limits and not doing quite as much, then getting better, compared to a lifelong, possibly extremely severe illness that is debilitating beyond words and takes much much more from your life. So if you get diagnosed with ME/CFS or think you have it, or if you have Long Covid, do not push past your energy limits. I would actually go so far to say that if you get COVID in general, take it easy and don't push yourself. Because you do not want Long Covid / ME/CFS.

Thank you for your kind, understanding and empathetic post @Souldriver

The short answer is that ME/CFS patients live with suffering that is beyond what most people could even imagine. But the answer to this question is complicated and multi faceted.

The first thing is that we have no choice. I don't have a choice. You would be surprised how much strength you have in you when you don't have an "opt out" button like on the show Alone. I have 2 choices: suicide or living with ME/CFS and making the most of my life. And I refuse to commit suicide, so I am trying to have hope for a cure or much better treatments and I'm practicing radical positivity and mind training to not fall into severe depression.

The most common cause of death from ME/CFS is suicide. Because patients have lost everything that makes them feel like human beings, everything that makes them feel alive, and they often feel there is no hope for getting better, (But there is! We dont' know what the future holds). But this statistic is also skewed by the fact that there is no diagnosis. So when someone actually dies directly from ME/CFS, it is not recorded as a death from ME/CFS. We have no records whatsoever of the death toll of ME/CFS because it's' never recorded. And if you look at the illness logically, you see that there HAS to be a huge number of unrecorded deaths.

I wrote a piece on my ME/CFS blog about this that is really important

The True Horror of ME/CFS

One of the things I do to survive is modify orthos, buy amplifiers to make them sound their best and most of all buy tons and tons of music! I spend a lot of time searching for new music. This all is just a way to get excited about something. Even if it is superficial. It doesn't matter when it domes to survival.

The most important thing is to adjust your expectations. Suffering comes form a discrepancy between your expectations and your actual life. Most people try to find happiness by pushing themselves to try to reach their expectations, but one can also lower their expectations. This is not easy at all. But I have lowered and lowered and lowered my expectations of my current life (not the future) to the point where I just hope of be able to work on some things here in bed. I call this "making your world smaller". If I expect my world to be the size that I am physically able to inhabit than I can actually find peace and happiness in the smallest things. This has taken me about 13 years of mind training to do, it's not easy.

But suffering is not comparable between people and if you look at the human population, suffering is not really connected to how well off someone is monetarily or physically or in any other sense. Suffering is a state of dissatisfaction. And that state of mind can be changed by changing the way you think about the world.

I have several posts on my ME/CFS blog that go into this all in more detail

Adjusting Expectations

Making Your World Smaller

The World Is There But It's Not There

But most of all, having hope can keep a person going through unbelievable suffering. And fundraisers like this give me hope. I know my father, Ron, can solve this illness. He just needs the funds to do it.

 

sending more love and prayers for a cure to be found
best,
Josh

 

Rhythm, I really thank you for writing that out. And reading your post has helped put some recent things in perspective for me. I wrote a bit in response but to be honest i deleted it as I felt it would take away from your words and this post. But please know as I deal with my own issues, your words and blog are helping me appreciate the small things.

If there is anything I cant help with, please let me know.

 

Not sure how I missed this thread until today. Reading rhythmdevils' post, it was like two separate online worlds collided for me.

I am a long-time headphone enthusiast. I attended the first ever national Head-Fi meet at a dingy motel in Queens, NY back in 2006. Back then the HD650s were TOTL and the hobby was much smaller and less commercial than it is now. I gradually got much deeper into the hobby over the next dozen years. I've owned a multitude of headphones/IEMs in the last 20 years and have also bought amps from Eddie Current, Apex, DNA, Luxman, Singlepower, Woo, Blue Circle and others I can't even remember.

I have also had ME/CFS since 1998. I was able to keep working for most of the first 20 years after getting sick, but I got much more severely ill in 2018 and had to stop working then. I led a highly circumscribed life the first 20 years of being sick because all I had energy for was work (at a desk job) and resting/recovering. My world has shrunk much further since then, to the point that I had to stop working and that for neurological reasons I am seldom able to leave my apartment or to listen to headphones anymore. (And God do I miss them!)

In any case, I've read and appreciated rhythmdevils' posts on this forum. I also know Whitney separately as the most famous ME/CFS patient in the world. He's been really brave to put himself out there to try to show others how devastating this under-recognized and underfunded illness is. But I had no idea that rhythmdevils and Whitney are one and the same person.

Everything rhythmdevils describes in his post is the God-awful truth. He is spot on that the Open Medicine Foundation is one of the only games in town as far as research into ME/CFS is concerned. I have made a monthly contribution to the OMF pretty much since it was founded. ME/CFS is an incredibly debilitating illness that involves a tremendous amount of suffering. It destroys quality of life, yet it is largely ignored by the medical and scientific fields. Research funding is abysmally low, there are no FDA-approved treatments, and the vast majority of doctors either know nothing about it or dismiss it.

In any case, I'm glad I came across rhythmdevils post today, though I wish I had seen it sooner.

I made a contribution to his birthday fundraiser today. It would be great if others kept rhythmdevils in their thoughts and maybe contribute what they can afford in honor of him.

 

Whitney is the masterclass in resiliency.

 

Some infographics I find useful for understanding the funding/need situation at a glance

I'd 'crash' & develop severe brain fog + exhaustion + blurred vision from more demanding cognitive activity especially if I was sat upright at a computer vs laying in bed. Think executive brain functions: Analyzing, comparing, planning. Driving was off the table, I'd 'crash' getting somewhere and have too much visual/cognitive troubles to drive again safely. Learned that lesson practicing driving with family fortunately so no incidents. Trying to push through it I'd get extremely confused or come around realizing I'd been spaced out for a few minutes. There were parallels to feeling drunk or derealization for sure. That was 'mild' ME/CFS although maybe some would call it moderate? I'm in awe of those who manage to maintain a working life at all like Minimus or my Mom whose seemingly been mild for 40ish years with minimal progression.

The differences with how this condition manifests person to person are wild. I seemed to get away with physical activity through most of the mild stages, had immediate symptoms in response to passing my exertion tolerances, and don't experience any pain. I've also lost anything I'd call tiredness or exhaustion since becoming bedbound; its primarily severe cognitive impairment & difficulties remaining consciousness outside severe flareups now. Managing it is a whole other topic, adjusting a volume knob on an amp & just eating a couple bites of food are as demanding as pull-ups used to be.. lots of slow movements & resting between actions is required.

 

thank you for sharing your story here. And it is interesting how these 2 worlds collided and you realized I was the same person! That's the problem with people keeping ME/CFS a secret. The prejudice against it is self perpetuating. It makes it such a huge burden for patients to tell even close friends that they have ME/CFS. You tell someone you have an illness called "Chronic Fatigue Syndrome" and they have never heard of it, and it sounds like "chronic tired syndrome" and they just look at you like you're not trying hard enough. Which couldn't be further from the truth.

There is no other illness that punishes activity, even mental activity in severe cases like ME/CFS. This is what causes so much profound suffering. I was just talking to a friend of mine with ME/CFS who used to be a professional dancer - you should see pictures of her pre ME/CFS - she's not only gorgeous but ripped and as fit as someone could get. And she's now bedridden and so sick that she hasn't even been able to sit up in bed for 5 years. Think about going from a gifted athletic dancer to not being able to sit up in bed for 5 years.

But there are stories like that everywhere. Millions of people have lost everything like this. And no one knows and our society does not care.

"I'm not like them and so it won't happen to me" is the worst curse to ever happen to humanity, but sadly most people think that way.

I'm so happy to see this image has made it all through the internet and is being posted here! I actually created this graph with the help of a ME/CFS patient who used to be a graphic designer. It was part of a letter I put together to President Biden to ask him to fund ME/CFS research and all the reasons why it was necessary for ethical reasons, economical reasons (ME/CFS costs the US billions of dollars per year in lost productivity and medical care and the number of ME/CFS patients is skyrocketing with Long Covid, which most of the time is ME/CFS. Every time someone gets COVID they have certain percent chance of developing Long Covid, so the number of ME/CFS patients is just going to keep going up until our country either invests in research and finds a cure, or we literally fall apart from lack of workforce and crippling disability payments for al the people who can no longer work.

But remember, ME/CFS has been ignored for 50 years. If NIH took it seriously from it's discovery, and invested in ME/CFS research, there would be a cure by now and ME/CFS would not exist and I would never have lost my life, along with millions of other ME/CFS patients and Long Covid patients (the subset off patients that have Post Exertional Malaise or PEM as a symptom and so likely have ME/CFS) would not exist.

Here's this image on my website where you can download it in screen or print resolution so patients can print it out and show their disbelieving friends/family/loved ones.

 

I want to share something horrific that is happening RIGHT NOW.

ME/CFS patients are being *killed* in hospitals around the world due to abuse, neglect and prejudice.

When a ME/CFS patient goes to a hospital for something necessary and sometimes unrelated to ME/CFS, they are sometimes sectioned as mentally ill and held against their will because the hospital does not accept a diagnosis of ME/CFS. This situation is extremely bad in the UK right now, there are currently 4 women in UK NHS hospitals being held against their will and literally tortured because the doctors will not acknowledge a ME/CFS diagnosis, and so they try to force the patients to move, or they take off their blindfolds by force, or remove their earplugs by force. And these are things patients use to limit their exposure to the world because their brains physically do not have the energy to process all the activity and stimulus around them in the world. These patients at home live in quiet, darkened rooms alone to keep mental stimulus to a minimum. A hospital is an environment of pure torture for severe ME/CFS patients, but made even worse when doctors try to force the patients to be subjected to things that hurt them physically. Because they think the patients are just "not trying hard enough" etc.

This is no different than forcing a lung cancer patient to inhale smoke, or forcing a patient with diabetes to eat sugar and not giving them insulin, or taking out a hammer and hitting the broken leg of a patient because they aren't able to walk, etc.

This is something out of the 16th century! ME/CFS is a real illness, and these doctors are ignoring all the information available even in a google search, and treating them based on their "feelings" or "instincts" alone. There are NICE guidelines written in the UK about how to treat severe ME/CFS patients and these doctors are just ignoring it.

Sadly, there is nothing written about how to treat severe ME/CFS patients who can no longer eat food because their stomachs have shut down, like mine has.

Here is one story of one of these girls being killed *right now* in an NHS UK hospital

============================

An 18 year old girl named Millie McAinch recently went to the Royal Lancaster Infirmary in the UK because she was not able to eat. She has severe ME/CFS and her stomach is not functioning properly, not allowing her to eat enough calories to stay alive. So they had to go to the hospital to have a feeding tube installed.

But instead of giving her a feeding tube, the doctors at the Royal Lancaster Infirmary tried to section her for an eating disorder, prevented her family from seeing her and kept her in the exact opposite conditions dictated by the NICE guidelines designed to prevent ME/CFS patients from being abused and getting worse while in the care of medical professionals. So Millie's case of severe ME/CFS worsened every single moment.

The doctors would not accept a diagnosis of severe ME. And to this day, they refuse. Millie has been in the hospital for I believe 2 weeks now simply because they refuse to give her a feeding tube.

The situation is not complex, you don’t even need to understand anything about ME/CFS to look at her vomiting up all of her food and realize she needs a feeding tube. But the doctors and staff would not at first even read the NICE guidlines or try to educate themselves about the illness Millie has.

Installing a feeding tube is a 1-2 hour procedure, which I know because I have a Jtube and have had this procedure done on myself in hospital at least 10 times. Feeding tubes break and need to be replaced every 6 months or so, sometimes less. If the doctors at Royal Lancaster Infirmary chose to, they could install a feeding tube in Millie today and release her from the hospital tonight.

Severe ME/CFS patients are being killed at an unknown rate in UK hospitals. And no one is doing anything to stop it.

Since writing about this issue I have spoken to countless patients who have barely managed to survive this experience and have horror stories about being kept against their will in UK hospitals for this same reason; The doctors refused to accept the diagnosis of ME/CFS and so kept patients at the hospital because they would not give them a feeding tube and at the same time could not release them because the patients could not eat enough to stay alive. These people were literally tortured sometimes for months and are permanently traumatized to the extent that they will never recover from the experience.

If a doctor killed a patient with heart disease due to treatments based on their own personal judgments and beliefs while ignoring all the facts and information and knowledge available (even on the internet) all doctors involved would be fired and sued for huge sums of money.

This is more enraging testament to the way even doctors with degrees in medicine think they are entitled to an opinion about ME/CFS without any kind of knowledge about the illness; Based on "beliefs" alone. And this infuriates me. No one treats cancer, HIV, Heart Disease, MS, Lupus or any other health condition when they know nothing about it. Uneducated beliefs and opinions are the reason we bled patients with leaches in the 1800’s. Millie's treatment at the Royal Lancaster Infirmary and the experience of countless other ME/CFS patients at hospitals around the world is no different than bleeding someone with a leach in a modern hospital in 2024.

Clearly the NHS staff and doctors are not "bad people", I don't believe in "bad people". The problem starts with a lack of education about ME/CFS from the top of our society, but this is then escalated by bigoted, ignorant and extremely arrogant health care professionals who inflict treatments based on uneducated, untrained opinions on extremely sick or dying patients.

======================

From my blog post about this:

How have we come to a place where hospitals are not only abusing people, but killing them? These are the most basic centers for health, healing and care in our society. For them to be abusive and killing means there is something seriously wrong with the NHS in the UK.

Everyone and anyone should be able to go to a hospital and be treated for any condition. They should be centers of comfort, wellness and care. We should feel safe going to a hospital knowing they are the best place in the entire world to be when we are sick or unwell.

But instead, when you have ME/CFS, hospitals are the stuff of horror stories. They blame, accuse, judge, then they misdiagnose, abuse, mistreat, and physically torture us like victims in a serial killer movie. The walls of UK hospitals are soaked in the blood of dead ME/CFS patients.

And hospitals in other countries are no better. But we deserve better. Humanity deserves better. ME/CFS and Long Covid patients deserve better.

END THE HORROR

=======================

Here is a letter I wrote to the doctors that are caring for Millie

---

And here is a page on my website with a list of things you can do *right now* to help Millie, even just signing a petition will help. But I have 3 easy things listed that you can do to help.

Please check out this page and take a moment to do something to save this girl's life.

========================

And here is an easy to watch Channel 4 news segment about 2 girls recently killed in NHS hospitals.

This is so tragic it brings me to tears every time I work on trying to stop Millie from dying. it is so unnecessary. These doctors just need to read about the illness their patient has and treat them according to what their needs are. But instead, they just look at how they are "behaving" and make quick, ignorant judgments and do things that make the patients permanently worse.

All this hospital holding Millie has to do is give her a PEJ feeding tube. This is a tube that bypasses the stomach and leads to the intestines so she can get liquid nutrition without her stomach getting in the way and making her throw it all up. but they refuse because they continue to blame mental illnesses for her stomach problems and will not accept a diagnosis of ME/CFS.



I am currently working with a mother who lost her daughter due to this exact same abuse in a UK hospital to try to use my letter to create a set of guidelines for how to to treat ME/CFS patients in NHS hospitals; That doctors are FORCED to f'ing read. I haven't been very active on the forums lately because I've just been swamped with this and writing other pieces about ME/CFS as well, and dealing with some very bad health that leaves me sleeping for days at a time (and I hate sleeping, I want to work on the huge list of projects I want to work on, one of which is rhythmdevils audio.

Thanks everyone for reading and for anything you do to help Millie or donate to my birthday fundraiser, which is still active:

http://spot.fund/FindACureForMEcfs2023

 

I'm going to say something in the most downplayed way possible. It's also the highest compliment I give.

You're a good human.

 

Thanks Alex.

I wish I could write the above in one paragraph so it was easy and quick for people to read, but there's so little known about ME/CFS and this situation is so horrifyingly opposite of what we think happens to sick people in hospitals, it requires some explaining.

If anyone needs a TL;DR, I think this summarizes the situation:

Severe ME/CFS patients are being killed in modern hospitals in 2024 by ignoring all evidence and facts and medical knowledge and basing their treatments on their "feelings" and "judgements" about the patient.

If a doctor killed a patient with heart disease due to treatments based on their own personal judgments and beliefs while ignoring all the facts and information and knowledge available (even on the internet) all doctors involved would be fired and sued for huge sums of money.

This is more enraging testament to the way even doctors with degrees in medicine think they are entitled to treat ME/CFS patients without any kind of knowledge about the illness; Based on "beliefs" alone. No one treats cancer, HIV, Heart Disease, MS, Lupus or any other health condition when they know nothing about it. Uneducated beliefs and opinions are the reason we bled patients with leaches in the 1800’s.

ME/CFS patients are subjected to treatment in hospitals in 2024 that is reminiscent of 19th century bogus medical malpractice.​

 

Another source for many well-documented horror stories on research and clinical prejudice against ME/CFS and long COVID:

https://virology.ws/category/david-tuller/

David Tuller has kept fighting the good fight against minimization of these terrifying conditions with little funding and repeated threats of legal action when he debunks incompetent, prejudiced research and clinical practice.

 

This is utterly shocking.

I would like to think it might make a difference, but there is still a lot of blindness among doctors to anything outside of their world. It's a closed shop.

 

I just came across this on my daily visit to Britain's The Guardian...

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal