With his son terribly ill, a top scientist takes on chronic fatigue syndrome

Washington Post ^ | October 5, 2015 | Miriam E. Tucker

[Seizethecarp]

Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. But now, at 31, Whitney lies in bed in a darkened room in his parents’ home, unable to talk, walk or eat. This isn’t the picture that people imagine when they hear “chronic fatigue syndrome,” which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.In a February report, the Institute of Medicine gave the illness a new name — systemic exertion intolerance disease. Many patients have long criticized the name “chronic fatigue syndrome” for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, “myalgic encephalomyelitis.” Most official documents refer to it with a compromise term, “myalgic encephalomyelitis/chronic fatigue syndrome,” or ME/CFS.

The IOM report notes that doctors often lack understanding of the condition and are often skeptical that it is a true medical condition, believing instead that it’s partially or wholly psychological.

Some may therefore be surprised that the illness is now a major research focus for one of the world’s leading biomedical scientists.

That scientist, Ronald W. Davis, is Whitney Dafoe’s father.

Davis heads the Genome Technology Center at Stanford University. In the 1970s, he developed techniques for gene mapping that were later used in the Human Genome Project, for which he was a co-investigator. In 2013, the Atlantic magazine named him one of “Today’s Greatest Inventors, ” along with such people as Vint Cerf, sometimes called “the father of the Internet,” and Elon Musk, one of the founders of electric-car company Tesla Motors.

[ryderann]

Right you are! Been doing them for years, but it’s the B-12 that puts the ol’ zing back in my life.

[GailA]

I have a digestive disease, Slow Motility, and it effects how I absorb nutrients from food or vit/Mins. Really stews my blood work up. And it limits the types of food I can eat. Takes up to 4 hrs to digest what someone else would in 1 hr. Distends the entire digestive tract and that causes PAIN.

Drugs are Black Boxed Reglan for 12 days due to the neurological side effects.

[LucyT]

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[PGalt]

Thanks for the ping; posts. Interesting. Health/life BUMP!

[hoosiermama]

Have they checked for a pituitary tumor? It controls adrenaline output which can cause your symptoms. Problems with adrenal gland can also cause high sugar levels and is second only to diabetes in endocrine symptoms.

[hoosiermama]

25 or so years ago I was diagnosed with a pituitary tumor. My eye doctor found it but I had no symptom. The young endocrinologist said it was a micro and hidden in the folds of the pituitary tumor
She moved on (was doing a fellowship at the time)
Her replacement told me to come back when I got symptoms
Not knowing what the symptoms were we’ve doctored for so much tested for more and ruled out many in the last year.
Then my new endocrinologist started asking questions and I’ve started remembering thru the fog and naps the detail and got busy googling
We’re running they same test a 25 years ago starting this week (all.records were destroyed after 7 years)
The symptoms no one bothered to explain are identical to most on here. Mine is inherited. Need prayers that we can find it this time. Treatment is much improved. Surgery thru nose or radiation. I just want a diagnosis— 90% of cure is diagnosis. And remember that 50% of all.doctors graduate in the bottom half of their class

[Monkey Face]

Please, don’t apologize for wanting to share your good news and good fortune. Just the idea of having a complete health turn-around is worth discussing with everyone you meet. Thank you for going into such detail.

Being on a fixed income, money doesn’t come easily to me, and the medical expenses I have are not covered by Medicaid or Medicare. Because of CFD/CFIDS, I use herbal remedies, and they are not recognized as on offset to anything.

However, I will see what I can do. For now, colloidial silver has done a lot to help me feel almost normal, but with my life in constant relapses and remissions, “normal” is what I was before I came down with it.

An ozone generator sounds like something worth trying, for sure, and I’m so happy that you have been able to make such a marvelous recovery. I wish you the best rest of your life!!

Thank you again for sharing your personal experience and for being willing to share the “cure” with others. :o]

‘Face

[Monkey Face]

I lost my job, my car, my apartment, my credit and my self esteem because of CFS/CFIDS 20 years ago, within a 12-month period.

Of the 60 some odd symptoms than can occur, I have had all but the seizures. But the insidiousness of the disease belies the trivial title. Through trial and error, I have now found a combination of herbal remedies that have helped to offset many of the symptoms, but to say it has overcome the disease would be a lie.

It costs me about $200 a month, which is difficult on a fixed income, but it is worth it, as it allows me a certain amount of feeling “normal.” If you would like a list of the meds, and where I get them, contact me by FReepmail. I will be happy to share.

‘Face

[freeangel]

Lyme disease is very probably the cause. If he has been tested for it, the problem is because there are really no definitive tests because the CDC has poopooed this epidemic for so long.

[freeangel]

I’d put him on 6 weeks of doxycycline and see if there is any improvement.

[perfect_rovian_storm]

Thank you for all the information. I’ve never lived anywhere that was (to my knowledge) repurposed, but maybe I was exposed to something. Now that I think about it, the symptoms actually started when I moved into a house in upstate NY that had been abandoned at one point before it was rehabbed and rented to me.

How’s this for a coincidence? I’m also allergic to Naproxin and I am able to take all other NSAIDs as well! lol

I go into full on anaphylaxis when I take it. Took two times before I was able to figure out what was causing it. (Apparently, I’m a slow learner lol)

[perfect_rovian_storm]

I know what you mean. I was a supplement junkie, spending north of $200 a month on supplements to try and help my problem. I got some relief from it, but it was definitely inconsistent.

Within a month of doing the ozone water, I was able to get rid of all of them except a multi vitamin and for once it was consistent and lasting relief, which the supplements never seemed to provide.

I never did try the colloidal silver, but I’ve heard good things and a lot of the folks who are in the Ozone Facebook group have mentioned that they use it.

I have since added back several supplements that aid in detoxification. That consists of n acetyl cystine, tumeric, milk thistle, and a large dose of MSM. I take those and a multivitamin every day. Total vitamin expenditure is now down to less than $50 a month.

[Cold Heat]

IMO, that naproxen stuff is probably doing a lot more damage to people then they know..

[CGASMIA68]

There is no definitive test

[Bob434]

[[25 or so years ago I was diagnosed with a pituitary tumor.]]

Me too- Had it surgically removed- I hope this doesn’t discourage you, (Your surgery just might help you tremendously- I hope and pray it does) but in my case, I had a rare condition called acromegaly (one in something like 6 million get it)- and the thing with acromegaly, it can cause many of the exhaustion symptoms and weakness, and foggy thinking etc- so I was thinking “Finally, an answer to my exhaustion” and was kind of excited thinking that the surgery would restore my energy- It didn’t-

Mine was affecting the growth hormone- and like oyu say, when that happens, it can cause the very same symptoms as Chronic fatigue- but again- the surgery didn’t do much- if anything to alleviate my symptoms.

The surgery is much improved, and much safer these days- this big worry is if the tumor is on the optic nerve- as that can cause vision problems- but today, they are using a camera up inside to guide the surgeon- (I went all the way out to boston to get surgery from a renown pituitary surgeon just so it would be done with that newish device, and wouldn’t you know it, my bad luck, the machine not working- and so they had to do it the old fashioned way)

The surgery wasn’t bad, and the recovery was fine- just be aware that you will get some tissue and likely quite a bit of mucous discharge which can be unnerving if you don’t know it could happen- The tissue deal is because they take a bit of your skin.fat to reseal the nasal cavity with after the surgery- sometimes a bit can come out and be a bit alarming- but it’s normal I guess- My surgery was in 2005, and I’ve ben fine- no issues-

One issue you need to be aware of, and I don’t mean to scare you, but if the tumor is pressing on optic nerve, there is a bit of a chance you could lose your eyesight- but like I said, the new surgery techniques have practically eliminated this problem- The % is very low now for vision loss— I wasn’t too concerned going in- and it shouldn’t be what stops you from getting the surgery because if left alone, the tumor could cause blindness too- and infact has a higher % of doing so depending on it’s location

Sorry for the not so encouraging news- but I think these are important thigns to weigh when one has a pituitary tumor- and like I said, your surgery could very well give you back your strength and energy as well-

[Bob434]

[[I know what you mean. I was a supplement junkie, spending north of $200 a month on supplements to try and help my problem. I got some relief from it, but it was definitely inconsistent.]]

That’s what I did- for years- trying loads of stuff- hoping against hope- only to get very disappointing results, if any-

[[I never did try the colloidal silver,]]

Good! Colloidal silver can cause an irreversible blue skin condition that literally makes people’s skin look like a smurf’s- honest- and you never know when it will happen either- people can take the stuff for years with no problem, then one day wham- blue skin-

[[I have since added back several supplements that aid in detoxification. That consists of n acetyl cystine, tumeric, milk thistle, and a large dose of MSM. I take those and a multivitamin every day.]]

I now just drink a lot of soda- makes me happy- I will however give the ozonated water a try if I find it doesn’t mess with immune system too much

[freeangel]

So, he needs to be treated symptomatically. That would be a minimum of 6 weeks with doxy.

[Bob434]

One thing I wish to mention- It could be that some might have a thyroid issue or even a parathyroid issue- You should all have your docs set up thyroid tests just to rule that out

There are quite aq number of diseases and conditions that cause ‘exercise intolerance’- McCardle’s is one such metabolic condition where the symptoms are almost spot on for what I experience, but again, another ‘let down’ in a way- I checked fine for such things-

with McCardle’s, I believe it’s an energy metabolism problem where the body doesn’t turn fat or food we eat into fuel very well

I’ve said right along that there is a problem with the way my body either produces fuel, or converts the fuel into energy- somewhere along the line, something is broken- not working right- not converting the food to fuel properly

There is also a ‘glycogen storage’ disease that has trouble using sugars or something-

But there are key markers for such diseases, non of which I had- and the tests are awful- they test the nerves in arms and legs with shocks=- quite painful too- Had the test 3 times now- and never again! Especially since 3 times now they haven’t found any issues- that tells me it’s something else- But I’m all doen looking for an answer- it’s been just too much for me- too much work, too much hope that gets dashed- too much money, too much time, too much -

My new motto is “Life is what it is and that is that” I’m just going to drink lots of soda now, eat lots of icecream, and smarties candies- and just enjoy life (while watching out for diabetes of course- Like the T’Shirt said [excuse the French] “Health food hell, At my age I need all the preservatives I can get”) And I’m going to enjoy what I like for awhile now- taking a rest from all the searching/hoping etc-

[CGASMIA68]

My 88 year old Maw was globing butter on something and my sis was there with us and I said Mom slow down on the butter and the sis wisely said,”leave her alone she’s 88”
Good advise

[LexRex in TN]

What is strange to me is that every once in a while I will have an almost “normal” day. I won’t be AS tired, I will feel sharper and more coherent. When I have gotten them I have invariably done too much, over exerted myself, and rode the roller coaster back into the valley.

It is very humbling. Seven years ago I moved my wife and I into our home single-handedly—almost 4000 sf of furnishings. I have finished the basement, laid new floors almost throughout the house, re-landscaped the back yard. Up until 18 months ago or so. The den is about halfway done with new flooring (I can’t muster up the energy or motivation to finish). The yard is currently filled with debris from the rainstorms that buffered us for the past 2 weeks. I am afraid that if I don’t get better and start contributing more around the house soon my wife will have had enough. She “knows” I don’t feel well, but it sounds like a cop-out.