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

[Ben H]

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

 

[Rufous McKinney]

Here is an article by Whitney Dafo

Incredible article! (that I have just barely started to read thru it, got to page 6).

I think its really valuable to describe these events and experiences for the many others who - make jokes that they would like to be lazy and sleep all day.

Or for doctors who simply- never ask. They never ask- what does it feel like?

And of course all this is a type of data. Data from n=1.

So wonderful Whitney has improved enough to work up this important info- a major massive achievement.

 

[splusholia]

‘A mental crash is very different. It can happen from thinking too much, from too much stimulation like noise or light. What was happening is that I got so severe that my energy limit extended into my brain. Anything that caused me to think more than my mental limit permitted caused a mental crash. It got so severe that certain subjects were too much for me to think about, and I had to try to control what my mind thought about. You know the saying that goes “Don’t think of a pink elephant”. It is very difficult not to think about something, but I had to learn to. I was in a nightmarish situation where my mind started playing tricks on me, flashing subjects I could not tolerate thinking about into my mind at the worst times and causing mental crashes. I was completely lost in a corner of my mind trying to keep my brain activity to a minimum. It was horrific.’ - from page 8.

... I cried reading this; this is exactly how it was for me. I was extremely severe too. It’s so impossible to describe to those who haven’t felt it. You learn to keep your mind blank. Our onset sounds similar too. I think of him regularly and I think and hope he will continue to improve.

 

[Ben H]

Incredible article! (that I have just barely started to read thru it, got to page 6).

I think its really valuable to describe these events and experiences for the many others who - make jokes that they would like to be lazy and sleep all day.

Or for doctors who simply- never ask. They never ask- what does it feel like?

And of course all this is a type of data. Data from n=1.

So wonderful Whitney has improved enough to work up this important info- a major massive achievement.

It is excellent- I'm working my way through it too.

It's absolutely invaluable to have severe and very severe ME/CFS as a focal point, it really needs far more attention. I'm severe baseline (bedbound) but dip into very severe often-not a term I use lightly-transiently, and it's very hard to describe.

Whitney has done an amazing job.

Looking forward to reading more!


B

 

[Rufous McKinney]

It's absolutely invaluable to have severe and very severe ME/CFS as a focal point, it really needs far more attention. I'm severe baseline (bedbound) but dip into very severe often-not a term I use lightly-transiently, and it's very hard to describe.

Similar tales could be told for....other levels of degree of incapacity.

The term moderate- doesn't convey it.

My decades of "mild" did not convey it, either.

 

[WantedAlive]

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

Great work and a terrific framework for symptom mapping, which should help toward unravelling the symptomatic subsets that we're seeing. 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. My sister was bedridden with ME during the 80's, yet she didn't have half the symptoms I have. It's such a complex illness.

This quote is an "oh-no" moment for me, near exactly how I've experienced it...

If I ever ate too much, it would be incredibly uncomfortable, and afterward my stomach’s functional limit would go down permanently, so I had to be incredibly careful. I would sometimes take 1/4 sized bites when I got towards feeling full, because one bite too much could be devastating.

 

[Rufous McKinney]

I'm recalling when I had to blindfold myself-so I could not see the beauty outside the window of the car, on that mountain road.

And what that felt like inside.

 

[Ben H]

Similar tales could be told for....other levels of degree of incapacity.

The term moderate- doesn't convey it.

My decades of "mild" did not convey it, either.

My point was that it's very rare (naturally) that a very severe patient's story is told first hand.

But for sure, I agree there is nothing mild or moderate about the illness, it's a point I reiterate often.

We need more stories in general, from all of the ridiculous severities of this illness.


B

 

[wingate]

This account vividly describes a living hell. The sheer strength and courage demonstrated by anyone living with severe ME cannot be understated. It is on a whole different level.

The indifference and lack of understanding our community continues to endure amid the horror and suffering of the disease itself just makes my blood boil.

 

[Alvin2]

I am so happy Whitney has improved enough to write this.

Its also very, very scary, i am having visions of getting this severe

 

[Marylib]

Absolutely amazing essay! I cannot say enough good things about it. I know it seems scary to some people, but it is awesome. It's a memoir that describes things professional writers at times find hard to describe. If I can remember the names of some of the memoirs I have found equally compelling - I'll try to get back here. I was looking for a place to discuss it. It not only describes a hell-world, it describes that 'in between' place he made reference to.
"I think ME/CFS is the greatest teacher I’ve ever had. I have hope that when better treatments, and then a cure, are found, I will be a much more conscious, wiser, more realized being. "

Personally, I feel this guy is a lot wiser than many people I know already. And I know a few wise people.

 

[Marylib]

I am so happy Whitney has improved enough to write this.
Its also very, very scary, i am having visions of getting this severe

@Alvin2 I am not a Pollyanna. Far from it, but there are many good pieces of advice in there. "Do less. Especially when you want to do more." Anyway, I hope you can take heart in knowing that as crazy as this illness is - it waxes and wanes, and you never know when you might start feeling better. Not that I judge those who simply can't take it anymore, so please don't misunderstand me. I wish you well.

 

[Marylib]

This account vividly describes a living hell. The sheer strength and courage demonstrated by anyone living with severe ME cannot be understated. It is on a whole different level.

The indifference and lack of understanding our community continues to endure amid the horror and suffering of the disease itself just makes my blood boil.

@wingate Yeah it has made my blood boil too, but I can't live that way. Life's too short. Wishing you well... However, lol - what does make my blood boil now and than are the arguments about case definitions. That's something for the politicians and patient advocacy groups - everyone has the right to their point of view. And I did myself no favors when I was arguing about that kind of stuff years ago.

 

[Alvin2]

@Alvin2 I am not a Pollyanna. Far from it, but there are many good pieces of advice in there. "Do less. Especially when you want to do more." Anyway, I hope you can take heart in knowing that as crazy as this illness is - it waxes and wanes, and you never know when you might start feeling better. Not that I judge those who simply can't take it anymore, so please don't misunderstand me. I wish you well.

My progression has not worked like this.
It has been a very slow motion train wreck, in only one downward direction.

That said i hope i do not get this severe but if i do i'm finished, i have no family that would help me, i would end up dead.
I find it best to plan for eventualities, hope for the best, prepare for the worst. But i have no Plan B, if i get this severe i would probably not survive.

 

[lenora]

OK....I have tried everything to access this article. All I seem to get is a round-robin, I start at the beginning and end in the same place.

I've tried to put in the topic, date of publication....the usual requests, and yet I still can't access it. Is there a problem? Would like to read it. Thank-you. Yours, Lenora.

 

[Jyoti]

@lenora: when I click on this link--https://www.mdpi.com/2227-9032/9/5/504 it takes me to a page where I can click on 'Full Text' or 'Download PDF' and clicking on either of those gets me to the article. Hope this works for you. If not, let us know what is happening more precisely. I am sure we can figure out how to get you to the article.

 

[lenora]

@Jyoti, thanks for your kind suggestion. I did exactly as you said and poof!....I was in the article itself.

@Whitney Dafoe @Janet Dafoe ... I honestly thought you had been restored to at least part of the person you were beforehand. I'm sorry that this is taking more time than you thought, but you know that you're in good hands between your parents and your sister.

I've been ill for over 35 years now. No longer young, I'm a 74 yr. old female. I can distinctly remember crawling in order to get around. Never in front of my family b/c I knew it would upset them too much. I can also remember hiding in my closet with pillows around my head to shut out any noise...I have no idea how I recovered to what I am today.

Rest assured that what you say is true: You are and will be a remarkable human being. You've traveled where few of us have before you. I wasn't nearly as bad as you are, but I can attest to the human being I was before this happened....and the one I became afterwards. Both are as different as night and day. Bear in mind that I volunteered for years before I ever became ill....I thought I was a giving person. Little did I know! So, while I have lost much, I've also gained another part of myself that I probably never would have known. I'm sure that a lot of us feel the same way. I know others are bitter, but I hope that passes and they discover the new person they have become. And no, it isn't an age "thing." Although we do tend to mellow with age or should.

I, too, have found that adrenaline helps get me through many situations...thankfully. I also find that I'm completely exhausted afterwards. Do you have trouble sleeping? Insomnia has been a burden for me for as long as I've been ill.

So now you're a writer? That's still an artistic talent, isn't it? Good for you....and I hope that you'll reach that plateau sooner rather than later. You gave a wonderful description of what life as a severely ill CFS/ME/FM patient is like. I hope it helps your friend. Yours, Lenora.

 

[lenora]

My progression has not worked like this.
It has been a very slow motion train wreck, in only one downward direction.

That said i hope i do not get this severe but if i do i'm finished, i have no family that would help me, i would end up dead.
I find it best to plan for eventualities, hope for the best, prepare for the worst. But i have no Plan B, if i get this severe i would probably not survive.

@Alvin2.....Please don't assume that you will become this ill. Many of us were very ill, no doubt of it, but very few reach Whitney's stage. I, myself, had no idea of the extent of his ordeal and I do read about him and his very caring family.

One thing I've learned over the years, is that we do our best day by day and all the tomorrows in the world are just that...tomorrow. We can all only do so much to plan, circumstances change in a heartbeat, and we experience things that we never even knew existed.

Try to learn Meditation, breathing techniques and remember, always: Be Not Afraid....! None of us know how we'll end in this life. A truly common thread that we all share. I wish you well. Yours, Lenora.

 

[Rufous McKinney]

My point was that it's very rare (naturally) that a very severe patient's story is told first hand

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

 

[Alvin2]

@Alvin2.....Please don't assume that you will become this ill. Many of us were very ill, no doubt of it, but very few reach Whitney's stage. I, myself, had no idea of the extent of his ordeal and I do read about him and his very caring family.

One thing I've learned over the years, is that we do our best day by day and all the tomorrows in the world are just that...tomorrow. We can all only do so much to plan, circumstances change in a heartbeat, and we experience things that we never even knew existed.

Try to learn Meditation, breathing techniques and remember, always: Be Not Afraid....! None of us know how we'll end in this life. A truly common thread that we all share. I wish you well. Yours, Lenora.

I'm not afraid or dejected, i have made peace with the possibility of things going downhill to Whitney's level or worse.
What i am saying is that i choose to plan what to do if i get to this level.
I also makes plans for if we get a treatment and i get better.

Advance directives, getting my affairs in order, a will, power of attorney and so forth, Hope to never need them but if i do then they are taken care of while i still can.