Why chronic fatigue is mistaken for depression

[southwestforests]

And this doesn't explain how all the people (including me) who got ill before there was any real information about ME/CFS on-line, still managed to come up with the exact same delusion even without reinforcement from others - it's astounding!

While I'm in a "that brings to mind ..." mood, that brings to mind my Dad getting ME/CFS then me getting it about 23 years later.
Back then my line of thought was that it wasn't going to be something I would get since with me not being in the military I didn't go to Vietnam, didn't go to other foreign countries, didn't get dozens of mystery vaccinations before going those places, didn't spend literally 13 years of my 28 year career at sea on ships which reeked of fuel oil and paint thinner.

Dad was the only person I had contact with who had this.
Of course other people existed, somewhere, with it since it was an officially listed diagnosis.
They were not in my life, not in my world.
Besides, ME/CFS is something my military veteran Dad has, I'm not a veteran, I won't get it.

Now, true, my health had been imperfect since birth, but so what, nothing is perfect in this world.

And in another 'now, true', true, all you have is my word for it, but when my health crashed bigtime December 2005, ME/CFS was not in my thoughts, as far as my brain got was something like, this ain't right, this is a problem, what's going on? how do we find out? how do we fix it?

ME/CFS was not in my mind when diagnosis was delivered in spring 2006, like how autism wasn't in my mind when that diagnosis was delivered in 2009.
ME/CFS was merely something Dad had. Autism was merely something heard about once every several years.

But when diagnosis was given, there was a "ya know, now that we're looking at it this has been happening for a while". True, far, far, longer with autism than with ME/CFS.
But it looked like ME/CFS may have been building for several years without me knowing about it.

 

[Rufous McKinney]

I don't think I'm explaining myself very well here but I hope I get the gist across.

you are but we live on a planet with over 140 countries.

 

[Rufous McKinney]

And in another 'now, true', true, all you have is my word for it, but when my health crashed bigtime December 2005, ME/CFS was not in my thoughts, as far as my brain got was something like, this ain't right, this is a problem, what's going on? how do we find out? how do we fix it?

You serve as an excellent Proof. You did not imagine ANY of this.

This can't be imagined.

 

[Rufous McKinney]

Of course other people existed, somewhere, with it since it was an officially listed diagnosis.

can you explain that further? About when did your Dad get a diagnosis? And it was actually ME?

 

[southwestforests]

This can't be imagined.

Which connects with how Dad had such a difficult time psychologically AFTER his health crashed.
He was a healthy athletic guy, a macho military officer.
But yet, one day he was out doing his morning run in Virginia Beach, VA, and his body said, "That's it, right here right now this very footstep, You Are DONE running." like flipping that proverbial light switch.
And that was so very, very, far beyond his paradigm of cause and effect reality ...

 

[Rufous McKinney]

He was a healthy athletic guy, a macho military officer.

How shocking and awful.

Yeah, I hiked for a living, not on any trails. I'd go camp alone in a wilderness for two months. Hang out with bears.

Then one day you decide to adopt a chronic incurable debilitating illness, because of boredom I guess. Why not? Its a brilliant idea, everybody should try it.

 

[southwestforests]

can you explain that further? About when did your Dad get a diagnosis? And it was actually ME?

Likely can not answer in a format you are looking for.
40 years ago is a long time to remember such details.
And I was absorbed in ending high school and starting college in those years.
And what was the diagnosis listing in the US military's diagnosis books almost half a century ago anyway?
And I've seen online people use ME in different ways and argue energetically about those differences whether ME is its own thing not involving CFS, whether ME is another name for CFS, just like occasionally intense argument about whether Asperger's is or is not autism.
I stay out of those places, but sometimes they do get tossed in my online path.

Dad's health collapsed 1981 or 82, might have even been 80, he retired in 85, don't remember if beginning or end of year, only that it was during blue uniform season, not white summer uniform season, with this and fibromyalgia as diagnoses on a list of several, which led to him being the USN's first medical retirement with those 2 things; so, diagnosis was given somewhere in there.

His health has been looked at long enough and thoroughly enough during the last 40 years that his medical records are literally between 3 and 4 feet thick and had to be carried in to a disability review hearing on a 2 wheel hand truck like used by warehouse and delivery workers.

What I can recall is that:
EBV, Epstein-Barr Virus was looked at and talked about then declared to not be the thing.
CFS was the name commonly used back in the 1980s in conversation about the officially recorded diagnosis.
And that from 40 years ago up to this current day, there is conversation about whether it could have at least one potential cause in a virus or other pathogen which is normal in the Middle East but us American white people do not have any natural resistance to.

 

[Mary]

This is the story of the United Kingdom but not the United States. It's a huge story, but I dont see Wessley playing any role here.

GET and CBT aren't considered treatments in the US. Maybe at a certain Kaiser Permanente.

Actually I think it is the story of the U.S. Until relatively recently, GET and CBT were the standard of care from the CDC and Mayo Clinic. That damn PACE trial was very influential around the world and still is to a very large extent. I think it's a big part of the reason why ME/CFS is not taught in medical schools here.

I just looked it up - the CDC stopped recommending GET and CBT as treatments in July 2017 - 2 years after the IOM report.

In 2015 the Institute of Medicine published a report which finally gave ME/CFS some respect, and laid the groundwork for other institutions to follow. This was huge - I remember when it happened:

In 2015, the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published a report on ME/CFS called "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness." The IOM committee summarized the evidence base and proposed redefining the diagnostic criteria to facilitate timely diagnosis and to improve understanding of the illness among healthcare professionals and the public.

https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html

Prior to then, I don't think any of the generally well-respected medical institutions in the U.S. acknowledged ME/CFS as a the very real devastating illness that it is. It's no accident that the Mayo Clinic pushed GET and CBT for so very many years - thank Simon Wesseley for this. And it was huge news a few years ago when Mayo finally published something intelligible about ME/CFS. I had an extended e-mail exchange with someone at Mayo in 2017 where they were very polite but refused to consider changing their tune.

ETA: As I recall, I even told them that the CDC had finally stopped recommending GET and CBT but it made no difference.

ETA: And see what our ill brethren here from countries other than the U.S. face around the world - lack of care, disbelief, CBT and GET.

 

[Rufous McKinney]

CFS was the name commonly used back in the 1980s in conversation about the officially recorded diagnosis.
And that from 40 years ago up to this current day, there is conversation about whether it could have at least one potential cause in a virus or other spathogen which is normal in the Middle East but us American white people do not have any natural resistance to.

that makes some sense, and some awareness of CFS may have existed around that time (mid 1980s).

It's extremely likely your Dad ran into some virus or another and then the viral Capture happened. And it could have started up not associated with Being Sick at the time (out jogging).

And the military may be a bit pragmatic. Your father not being some newly enlisted person trying to escape an assignment.

Actually I think it is the story of the U.S. Until relatively recently, GET and CBT were the standard of care from the CDC and Mayo Clinic.

The only place I ever was able to confirm this GET and CBT stuff was at Kaiser Permanente Northern California. And they dropped it a number of years ago as I recall.

 

[southwestforests]

I just looked it up - the CDC stopped recommending GET and CBT as treatments in July 2017

Very much remember that, have a reference which I very much remember,

And speaking of very, I was very active in ME/CFS and Fibromyalgia groups on Facebook until they kicked me off in 2015 because of their documentably incorrect accusation that my computer had malware according to their documented in the press at the time dysfunctional and error prone "Malware Checkpoint" program.

https://www.npr.org/sections/health...ic-fatigue-syndrome-more-exercise-isnt-better

For People With Chronic Fatigue Syndrome, More Exercise Isn't Better​

October 2, 2017 5:40 AM ET
Heard on Morning Edition
Michaeleen Doucleff

The Centers for Disease Control and Prevention has already revised its patient guidelines on ME/CFS and is currently revising guidelines for physicians.

The action by the federal agency is a significant shift in the years-long controversy over diagnosis and management of the disease, which is characterized by months of incapacitating fatigue, joint pain and cognitive problems.

And last week, the National Health Services in the U.K. said it would reassess its guidelines for ME/CFS recommending exercise, after 20 members of Parliament signed a petition urging a review.

Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It
Shots - Health News

(link to that bit posted below)

Doctors and patient advocates say the update by the CDC is a major victory for people with ME/CFS, and that a revision of British guidelines is sorely needed. They are hoping other major medical sites will follow suit and revise their information on the disease, which is thought to affect at least a million Americans.

Many websites have outdated information that perpetuates a key misperception about CFS: "That you can exercise your way out of this illness," says Dr. Nancy Klimas of Nova Southeastern University in Miami, who has served on the ME/CFS advisory committee for the Department of Health and Human Services and has treated people with ME/CFS for 30 years. "That's just not true. You can exercise, but you have to be extremely cautious. And it will not cure you."
...

See also: linked in article,

https://www.npr.org/sections/health...-fatigue-syndrome-is-a-disease-and-renames-it

Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It​

February 11, 2015 11:41 AM ET

By Miriam E. Tucker

The mysterious and complicated illness that has been called chronic fatigue syndrome has a new definition and a new name: systemic exertion intolerance disease, or SEID for short.

The name change is big news because many patients and experts in the field hate the name chronic fatigue syndrome; they feel that it trivializes the condition. Another name, myalgic encephalomyelitis, has been used in Canada, the United Kingdom and elsewhere, but it doesn't accurately describe the illness, either.
...

 

[Mary]

The only place I ever was able to confirm this GET and CBT stuff was at Kaiser Permanente Northern California. And they dropped it a number of years ago as I recall.

Well, I have my emails from Mayo and it's documented what the CDC used to say. I didn't make it up. I'm sure you know about Kaiser. And if Mayo and the CDC said it's all in our heads, I can't imagine anyone else going against them till they changed their tunes. You can find this information on-line if you want to look it up.

 

[Rufous McKinney]

I didn't make it up.

Oh I believe you....of course. I didn't bother with checking Mayo because they were not able to diagnose a good friend of mine who died of a mysterious brain ailment associated with cerebral spinal fluid issues (they thought).

I'm in a mood, my apologies. My family are in the beautiful mountains hiking and I'm here sick every day and I'm fed up. I'm angry today.

So maybe being Angry is a good sign for me.

 

[southwestforests]

So maybe being Angry is a good sign for me.

It is a sign that what has been lost was important, is important, does make a difference, does matter.

 

[Rufous McKinney]

, is important, does make a difference, does matter.

Yes.

Also I find that anger requires some level of energy and I often can't even muster that. When I start to feel a bit bored, or depressed, or angry, I figure I must be feeling a bit more like a NORMAL human.

 

[Viala]

This is part of a clear conspiracy fostered in the US by the private insurers, and Big Pharma.

It's more or less the same all over the world, but US sets the tone with FDA and WHO. Other countries follow, which was clearly seen in 2020. And WHO is mostly funded by private entities, it's wild.

Private insurers I am certain are only a small part of it, a top of the iceberg. A possible explanation is as usual, to follow the money and power trail. Low quality food from chemical fertilization of big agriculture creates disease and disease creates profit by fueling pharma and medical industry. It also creates weak and poor society, easy to manage and control. People have low energy, weak minds, are easily manipulated, more obedient and do not have enough money and stamina to do much about all of it.

Diagnosing depression also brings profit, it's better than diagnosing ME/CFS. They can sell their produce this way, meanwhile keeping the disease intact, so it's a perpetum mobile. Us spending money on multiple doctors and many many things also creates profit. We want to get some financial help? That creates loss. No ME/CFS diagnosis, more profit.

 

[Viala]

I think the odds are staggering that 20 million people (rounding off for convenience) would all be afflicted by the exact same delusion and would all rather stop their lives than do a few simple things, such as GET and CBT. How do 20 million people all develop the same delusion (that exercise hurts them)?

The only delusional people in this story are doctors who think that 20 million people have imagined something. It's doctors who hallucinate mass hysteria and depression, conversion disorder, laziness and hypochondria. They wouldn't know better if it hit them in the face, they think they're infallible so there can't be anything else and med schools teach them to think this way.

This thread here covers this very well, I am sure you've already read it, but maybe someone else could also see. Psychological aspect of how doctors are trained is strongly underrated.

 

[Rufous McKinney]

Diagnosing depression also brings profit

Its like once something gets set up, it has a way of perpetuating itself.

The ME clinics in the UK with their GET and CBT- now all those folks employed there who do that wish to continue to be paid to do that. Now they are an industry which strives to maintain its self. Regardless of facts.

 

[Rufous McKinney]

Low quality food from chemical fertilization of big agriculture creates disease and disease creates profit by fueling pharma and medical industry.

I just watched an interesting video. a woman thought she was gluten intolerant, until she went to Italy and had no issue eating THEIR flour products. Return to the US, all her sensitivities returned.

They now order flour that consists of the ingredients: Wheat and Salt. They found a brand from Italy and found one in the US that works for them.

Something "else" in our Flour, was causing all these negative symptoms. (fatigue included)

 

[southwestforests]

I just watched an interesting video. a woman thought she was gluten intolerant, until she went to Italy and had no issue eating THEIR flour products. Return to the US, all her sensitivities returned.
They now order flour that consists of the ingredients: Wheat and Salt. They found a brand from Italy and found one in the US that works for them.
Something "else" in our Flour, was causing all these negative symptoms. (fatigue included)

Yep, that's a thing I first became aware of before having internet access, way back in the mid 1980s whle getting allergy shots in Norfolk, VA.
Mom being a dietitian might have also been a factor is what I was and was not aware of and when I became aware.

Here's a somewhat more recent reference,
https://www.eatradius.com/why-are-bread-pasta-and-other-flour-products-easier-to-digest-in-europe/

It’s a tale as old as time—your gluten avoiding, holistic eating friend heads off to Italy and suddenly her Instagram stories are full of photos of paninis. What gives?

You might imagine that your friend is paying for their wheat spree with bloating and inflammation, but anecdotally it seems that many people have different experiences consuming bread, pastas, and other wheat derived products while in Europe vs within the US.

Is this superstition, a placebo effect, or something deeper?

At Radius we want our daily bread to be as nourishing as possible. So we researched what makes European bread great, and what we can do to find those qualities here at home in Austin, TX.

How European bread is different​

The closer we looked, the more differences we found between American and European bread, wheat, and gluten. The vibes might help (who wouldn’t be less inflamed after eating a brioche in a gorgeous piazza or croissant in a leafy park?), but the differences are definitely grounded in science. Here are the factors to consider:

1. Wheat varieties and gluten levels: European bakers often use wheat varieties with lower gluten levels that are easier to digest.
2. Glyphosate: Glyphosate is banned in many European countries, and unfortunately common in the U.S. at multiple stages of wheat’s lifecycle.
3. Additives during harvest, storage, and baking: Like glyphosate, Europe bans many chemical additives that are common in the U.S.
4. Fermentation and baking process: Sourdough fermentation and high heat baking are two more factors that make flour products more digestible.

Wheat varieties and gluten levels​

Let’s start with the root of the difference between American and European flour and wheat products—the wheat varieties each region is most likely to grow. According to the U.S. Department of Agriculture, this is the breakdown of wheat varieties grown in America and Europe each year:

Variety	Wet gluten percentage	American production	European production
Hard Red Winter (HRW) wheat: Used to make bread flour	32.80	40%
Hard Red Spring (HRS) wheat: With high protein levels, this grain is used for specialty breads and blending with lower protein wheat	34.20	25%
Soft Red Winter (SRW) wheat: Used for cakes, crackers, and cookies	20.30	15%
White wheat: Used for noodle products, crackers, cereals, and crusted white breads	19.09	15%	85.44%
Durum wheat: Used to make pasta	26.54	5%	14.6%

As you can see, hard red wheat is the high protein variety that’s in most American made wheat products, and high protein means high gluten. In the EU HRW is less commonly used, and rarely grown. Although some areas of Europe have climates that could theoretically support hard red wheat, the region’s farmers prefer to focus on varieties which are better adapted for both their climates and culinary preferences. Instead they rely on lower protein varietals like durum (for pasta and semolina) and soft wheat (for breads and flour), which have lower gluten content than HRW.

 

[Rufous McKinney]

Here's a somewhat more recent reference,

excellent web site and discussion!