Article by Whitney Dafoe dedicated to severe and very severe ME/CFS

[Marylib]

@Alvin2 I can tell you that I felt an immense relief when I gave someone my power of attorney. I did not choose a family member for this, because I want to keep changing family dynamics out of the equation. I have dual residency in terms of countries and I also want to keep changing political landscapes out of the equation. I had to pay two lawyers, otherwise it is a trusted friend (in one of those countries) who knows the password on my laptop. The deceased estates officer at my local credit union holds much of the information. I'm not intending to die any time soon, but you never know when your time is up. Some people find it sad to think about the fact that we are all mere mortals but I don't. I suppose I am fortunate in that. I am also very fortunate that I am not ordinarily in overwhelming physical pain, and I can eat and digest food. For this I must thank the person who diagnosed me fairly early on. Plus I have common sense and can take various meds orally when I need to. That helps. I know that many people advocate various forms of meditation. Okay if that works. My means of meditation is not one generally practiced by the public at large. But is is no doubt the most important aspect of my life. I had 40 physically healthy years of life though sadly I was never able to have my own children. I may have life ahead but this present moment is all that I know.

 

[Marylib]

I entirely understand....its part of a general theme called: why does nobody ask? and why do so few listen?

I think that in general, people don't understand what they have not personally experienced. I may have said this before, so please excuse any repetition. To my own perspective, this disease does not hold any special place in the pantheon, thought I understand why it does to some, and I encourage free expression the same way I encourage poetry and art. Whitney's perspective is very welcome and I hope he keeps on expressing what he feels when he is able to do so.

 

[Marylib]

This is the other piece of literature, art rather than science, that I have found the most personally moving about Whitney's story - I mean, I appreciated the attention that he got, or some people got, through Unrest, the film, and I believe that in this piece @Janet Dafoe may have been mistaken for a medical doctor, a psychiatrist, rather than a PhD - but to me, this is also a beautiful piece of writing. By Stephanie Land. Perhaps Stephanie's world never intersected with this forum, and perhaps because I myself have had romantic love affairs that endured into cherished friendships, usually with fellow artists of one ilk or another, I felt like reading this again. These two accounts seem like bookends on a shelf to me:

https://longreads.com/2016/10/24/th...CXkE_9_SJE2glJnGQUAVVodu1o7a04AJD0#more-40474

 

[max_yazhbin]

Hi guys,

Here is an article by Whitney Dafoe @Whit now published in Healthcare journal dedicated to severe and very severe ME/CFS:

https://www.mdpi.com/2227-9032/9/5/504


B

@Janet Dafoe

@Janet Dafoe , @Ben H , I read the article as well, about a week after it came out as I was looking more into Whitneys' condition to see if there was some useful information that was related to my condition of multiple chemical sensitivities (I don't have MCAS as far as I can tell and I've done some experiments to see that possibility was likely). I remember when I was in a severe state too, that was when I did DMSA chelation to get rid of the mercury, in my case, my blood levels pre-chelation challenge were within reference range, and yet under chelation, they were 10x higher as the mercury deposits in the fat such as adipose and brain tissue. I wish I had known about emeramide as a chelating agent as it is much better in my personal experience. While on DMSA, I was well enough to be able to stay awake and move around for a few hours a day with the ability to have a somewhat lucid conversation after I had to move back in with my parents.

My parents read Whitney's account and while I treated it as familiar, they couldn't finish reading it because of the sadness that was in their eyes. My father asked me if I was that sick and I said I was during the beginning of my mercury chelation treatment.

Even when I explain to people what I went through, they still don't understand it and as such forget about what I said. I know it is tough, I am still in that place, a better place than before, but still not cured. I thought that the covid-19 or long covid patients would bring some useful light into this field, but as far as I can tell, we are still alone together. I am continuing my experiments, please put a comment if you are too.

 

[lenora]

Hello Everyone....Yes, it's good that Whitney's condition is receiving the attention it deserves. We should all thank his parents for what they do also. (Ron Davis, Researcher into CFS/ME of the OMF, father of Whitney and cartetaker when he can) and Janet Dafoe (Psychiatrist, mother and caretaker of Whitney) and also Whitney's sister who helps when she can.

We're delighted that Whitney is able to write when he's able, even though it must take everything he has out of him, and have every hope that he'll one day return to the life he dreamed of. Be well. Yours, Lenora.

 

[lenora]

@Janet Dafoe , @Ben H , I read the article as well, about a week after it came out as I was looking more into Whitneys' condition to see if there was some useful information that was related to my condition of multiple chemical sensitivities (I don't have MCAS as far as I can tell and I've done some experiments to see that possibility was likely). I remember when I was in a severe state too, that was when I did DMSA chelation to get rid of the mercury, in my case, my blood levels pre-chelation challenge were within reference range, and yet under chelation, they were 10x higher as the mercury deposits in the fat such as adipose and brain tissue. I wish I had known about emeramide as a chelating agent as it is much better in my personal experience. While on DMSA, I was well enough to be able to stay awake and move around for a few hours a day with the ability to have a somewhat lucid conversation after I had to move back in with my parents.

My parents read Whitney's account and while I treated it as familiar, they couldn't finish reading it because of the sadness that was in their eyes. My father asked me if I was that sick and I said I was during the beginning of my mercury chelation treatment.

Even when I explain to people what I went through, they still don't understand it and as such forget about what I said. I know it is tough, I am still in that place, a better place than before, but still not cured. I thought that the covid-19 or long covid patients would bring some useful light into this field, but as far as I can tell, we are still alone together. I am continuing my experiments, please put a comment if you are too.

@max_yazhbin......So you have found the chelation therapy to be helpful? Where are you having it done? Y

@Mariaba (or Alice)....the longreads article about Whitney was excellent. I thank both of you for bringing this once again to our attention as I'm sure many possibly missed it. Yours, Lenora.

 

[max_yazhbin]

I did find it helpful but it didn't cure me, it just prevented me from getting more severe yet I am still unable to work or think for long. I was having my DMSA initially sources from my naturopath, until I found an option online and then found out about emeramide which is much better, it is cheaper per gram, takes less time, and has fewer side-effects. I get mine from medkoo and I am still not done with the 20g vial.

 

[Murph]

I found this list quite compelling

Severe ME/CFS List in Brief—Summarizing My Quality of Life

• I haven’t left my room for 7 years, except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time, as well as Fentanyl and Versed during the procedure;
• I haven’t been touched by another human being without it hurting me in 7 years;
• I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years;
• I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes;
• I haven’t taken a shower in 7 years. I clean the most necessary parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me;
• I haven’t cut my own toenails in 7 years;
• I haven’t been able to hold or even touch my camera in 7 years (photography is my passion and my life);
• I haven’t peed standing up in 9 years. I haven’t walked to the bathroom to pee in 7 years. I pee in a urinal in bed;
• I haven’t made love to a woman in 9 years. I haven’t been sexual in any way in 5 years;
• I haven’t brushed my teeth in 6 years. It hurts my stomach, making it worse and putting my ability to tolerate the feeding tube at risk, which puts my life at risk;
• I haven’t seen a dentist in 9 years;
• I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years. I wear heavy-duty earmuffs whenever my caregivers are in my room for the bare minimum of time. They can’t talk and have to be as quiet and gentle as possible;
• I haven’t felt like a human being in 7 years. All humanity has been taken from me by ME/CFS. I live only to continue living. There is no love, joy, passion or creation, only endless, numbered days; (See Appendix A.1)
• I fight to survive for all those living and dying in silence and darkness (see Appendix A.3).

https://www.mdpi.com/2227-9032/9/5/504/htm


Extremely Severe ME/CFS-A Personal Account Whitney Dafoe DOI: 10.3390/healthcare9050504

Abstract

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.

Full text at the link: https://www.mdpi.com/2227-9032/9/5/504/htm

 

[Marylib]

@max_yazhbin Today I listened to part of an interview that Cort Johnson did with Dr Eleanor Stein. Dr Stein has herself been dealing with multiple chemical sensitivities for a long time (she came down with ME in 1989 or so). Perhaps this interview might be of interest to you. It could be a hopeful thing to hear.
https://www.healthrising.org/blog/2...nic-fatigue-fibromyalgia-ei-eleanor-stein-md/

 

[christiankatz]

This article needs to make it into medical school...just imagine the fascination of student doctors with this puzzle!

Totally agree! It should be required reading.

I hope everyone here reads the article. It's somewhat traumatic to read, but Whitney is a true inspiration. He describes the workings of ME better than anything I've read or heard.

 

[Rufous McKinney]

The gap between moderate and very severe ME/CFS is extreme, it's hard to accept they're the same disease...and yet I've gone from moderate to severe.

I view these differences as potentially tied to how much OI /CCI type instability your experiencing. Which then brings with it, more neurological challenges (lite, noise, etc).

So when I got myself in a state of prolonged PEM, and worsened considerably- it was lots of neurology, can't process the view outside the car window, blood not returning, tachycardia, incredible weakness. So maybe I pulled out of that extremely low state, over about a YEAR. Of doing almost nothing. (major rest).

 

[WantedAlive]

I view these differences as potentially tied to how much OI /CCI type instability your experiencing.

And you'd be right! At least for half my sorry story. In my case, there were two significant events that I recognise as main the contributors to my deterioration from moderate to severe.

One of them was chiropractic manipulation of the cervical spine. I've discussed this in another thread, but with just two adjustments, I improved from moderate to mild with the first, then down to severe after the second, all over three weeks such was the instability of my neck. The effect of the second adjustment I felt immediately, but the deterioration came a week to ten days later and I migrated to needing a wheelchair. An MRI revealed no obvious CCI or spinal chord issues.

The first main contributor to my deterioration was a single event of over-exertion. Feeling 'cured' by the keto diet, I stupidly decided to test out my newfound energy with a storming walk. It only took 300m before it all suddenly fell apart and I could barely return to the car. Thereafter I was down a rung on the disability scale and never recovered my pre-keto condition on any diet.

It would actually make an interesting survey of those patients who have deteriorated, what significant events they recall that they are sure contributed mostly to their deterioration.

 

[roller]

"Out of desperation, I tried eating turkey patties before bed instead of yogurt. About 3 weeks later, I woke up one morning and my stomach still felt full from the turkey patties I ate the night before. This was the beginning of my stomach no longer functioning."

https://www.mdpi.com/2227-9032/9/5/504/htm