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Chronic fatigue syndrome may have a post-viral infection origin

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Re: Chronic fatigue syndrome may have a post-viral infection origin

#231

Post by johnchristopher »

talldatethrow wrote: post #210
johnchristopher wrote: post #205

Earlier quoted context omitted.

Why 90 days ? Why juice ? And what's supposed to happen ?

Because 90 days is long enough to see results for most people, but not so long that it's an impossible time frame. Because drinking 10 lbs of vegetables is doable, but eating them is almost impossible raw. If you cook them, it's still hard to eat 10 lbs of vegetables and you've killed a lot of nutrients. Because it gives your body a break from digestion. You'll feel a lot better. Edit: even those that think the idea…

> You'll feel a lot better.

But you don't say why and how it's relevant to the topic at hand.

Anybody can come up with "eat vegetables". "Eat food. Not too much. Mostly plants."

Re: Chronic fatigue syndrome may have a post-viral infection origin

#232

Post by pixl97 »

doingtheiroming wrote: post #70
tauberian77 wrote: post #57

Earlier quoted context omitted.

In my case, the CFS like syndrome was all in my head in the worst fashion possible. After COVID, I developed a cross reactive species of antibody targeting my hippocampus and the opioid receptors in my brain. I have been bedridden since I was 17. I also manifested severe orthostatic intolerance and peripheral neuropathy that put me in the lowest 1 percent of neurite density. I was diagnosed at Mass General Hospital a…

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…

> is there a department of immunology that takes over or even contributes.

Because we don't see the immune system as the organ it is. Which is odd that things like vaccines are effectively medicines for that organ.

But at the end of the day we still don't know 'that much' about the immune system because of its extreme complexity. It's still very difficult or impossible to target a bad acting immune response in an individual without disabling all the immune system (and yea, this puts you at a lot of risk).

I like the series that Kurzgesagt made on the immune system as a way to explain this complexity a little more simply.

https://www.youtube.com/watch?v=lXfEK8G8CUI

Re: Chronic fatigue syndrome may have a post-viral infection origin

#233

Post by gyy52380 »

talldatethrow wrote: post #208
gyy52380 wrote: post #199

Earlier quoted context omitted.

Why ground beef?

Because I have tried it many times and my body has some intense urge for beef, and ground beef IMO is the easiest to make, digest, and cheapest and has fats that are good for you IMO. Some people think poorly of ground beef because "you don't know what's in it!" But moments later will tell you it's important to eat all parts of the animal because they have different nutrients. Ok then, sounds like ground beef is a go…

> There's also the fact that beef is basically the one food you could eat alone 365 days a year your whole life and get everything you need. That doesn't apply to vegetables or chicken or anything else really.

Do you have some sources to back this up? I was under the impression that you should really eat red meat in moderation, but this might be outdated info.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#234

Post by nick_ »

cstrahan wrote: post #52
alexfromapex wrote: post #2

My money is on Epstein Barr causing it. Even acutely, many are faced with intense fatigue.

That’s my guess. Got EBV back in 2015, and spent about a year with debilitating photophobia, visibly bulging lymph nodes, along with a host of symptoms that still haven’t gone away: excruciating joint pain, muscle weakness, headache and brain fog, anhedonia, annihilated sex drive, etc. Trying to manage my symptoms, I got a hormone panel to compare pre-EBV. Testosterone and Estradiol dropped by about 65%, where it rem…

If you haven't already, you could look into trying daily Valacyclovir. Epstein-Barr is one of the HHVs, and may be helped by that drug.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#235

Post by Gibbon1 »

whimsicalism wrote: post #128
pjc50 wrote: post #112

Earlier quoted context omitted.

Hmm. The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? This reminds me of a lot of physical/psychological/"it's all in your head" discussions with various sorts of CFS sufferer, most of whom have serious problems getting anyone to take seriously the possibility that it might not be all in your head. https://www.cfsselfhelp.org/pacing-tuto…

While it may be true that CFS people have trouble getting doctors to take their symptoms seriously, it is also true that researchers who investigated psychosomatic origin of CFS had to to discontinue their research due to the number of death threats they were receiving.

An interesting thing is the number of conditions attributed to psychosomatic causes has been steadily shrinking over the last 100 years.

50 years ago if you had IBS or crohn's disease your doctor would send you to a psychiatrist

Re: Chronic fatigue syndrome may have a post-viral infection origin

#236

Post by JPws_Prntr_Fngr »

wnolens wrote: post #123
smearth wrote: post #91

Earlier quoted context omitted.

I think conditioning medical students to race other medical students to label health problems quickly- efectively turning medical school into a sleep deprived game of trivial pursuit for competitive, high IQ, mentally resilient, energetic people - only prepares those people to heal simple medical conditions involving 1 or 2 body systems. This functionality is becoming largely replaceble by llm’s who are also competen…

> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints. Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests diffe…

When your CNS is at 0%, it's weirdly difficult to hold your spine and head straight against gravity. You start leaning on stuff, resting your head on your hand, etc.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#237

Post by smearth »

smearth wrote: post #209
GordonS wrote: post #119

Earlier quoted context omitted.

I have CFS too, going on 8 years now. Small fibre neuropathy in my limbs too. Aside from pain management (opioids, ketamine, cannabis), I haven't found anything else to be helpful, and pacing was the opposite of helpful. You mentioned strength training... how is that possible? I don't know about you, but I have a constant, lactic acid-like burning sensation in my arms, which becomes much worse upon exertion - for exa…

Because the best way to think about the syndrome is that you are a really terrible athlete. I find it a healthy way to reframe what I’m dealing with. I laughed at Eric the Eel, he’s laghing at me taking out the rubbish now. They say athleticism is a reduction in recovery period. Combine this with the fact the brain burns loads of energy and certain aspects of the brain uses things like the inner ear and vagal nerves…

Sorry I misread kettle for kettle bell. But the load is irrelevant.

If you are that weak then start with fragmented swimmers stretches 1 limb at a time. I was in the same situation in 2018 but you do forget once you escape. Just do 1 rep on each limb every second day until you can do two. Or figure out the training periodicity for your body so that you can build up to 30 swimmers stretches. Then add in another exercise.

The feeling of muscular fatigue doesn’t matter - the not overtraining is the important bit.

There’s so many other things to get right also but getting physically stronger will only help. I’d talk with a sports physio first if I was in your situation.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#238

Post by jassyr »

nso wrote: post #185
jassyr wrote: post #156

Earlier quoted context omitted.

>I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body . . . . at no point, is there a department of immunology that takes over or even contributes. As a person with Multiple Sclerosis seeing a neurologist I have been wondering this very thing since my diagnosis. I am on a B-cell depleting drug. It feels silly talking to my neurologist about my B cells. Lots of te…

Ocrevus? How's it treating you? I've been on Fingolimod Accord (generic Gilenya) for a year, Gilenya for 8-9 years, and before that Rebif for like 13 years? Medicated at 18, ill since 12. Never felt better really. Symptom free and side-effect free. The Rebif was kicking my ass with its side effect, I attribute my constant intrusive suicidal thoughts during that time to the medicine, but other than a lower-than-normal…

After 3 years of Ocrevus I'm switching to Kesimpta this week. I've had too many infections with Ocrevus and I'm hoping the lower dose with Kesimpta will help. I had laryngitis for a few weeks, Covid for a few weeks, other little things too, and have had to miss work as a result. Otherwise Ocrevus has been amazing for my MS!

I was diagnosed almost 15 years ago and doing fairly well. I skipped the 'CRAB' drugs specifically because of the depression/suicide risk. Being already at risk for those things I thought the negatives far outweighed the positives -- personal choice.

So glad Gilenya is working for you! Some of the new drugs are quite amazing.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#239

Post by mushbino »

talldatethrow wrote: post #210
johnchristopher wrote: post #205

Earlier quoted context omitted.

Why 90 days ? Why juice ? And what's supposed to happen ?

Because 90 days is long enough to see results for most people, but not so long that it's an impossible time frame. Because drinking 10 lbs of vegetables is doable, but eating them is almost impossible raw. If you cook them, it's still hard to eat 10 lbs of vegetables and you've killed a lot of nutrients. Because it gives your body a break from digestion. You'll feel a lot better. Edit: even those that think the idea…

I usually process a bunch of vegetables in a Vitamix because I think it's better to have it with the fiber. Would this be less of a good thing than just a straight juice? I've heard the juice loan isn't great without the fiber, but I don't know.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#240

Post by smearth »

JPws_Prntr_Fngr wrote: post #236
wnolens wrote: post #123

Earlier quoted context omitted.

> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints. Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests diffe…

When your CNS is at 0%, it's weirdly difficult to hold your spine and head straight against gravity. You start leaning on stuff, resting your head on your hand, etc.

Totally, interestingly they diagnose the illness with a tilt table in some countries.

I had an inversion table atempting to relieve my thoracic pain at the time of my diagnosis. Which was a diagnosis of exclusion. I was gutted by the chronic diagnosis.

I was lucky that the inversion table allowed me to accept that I had the condition post diagnosis because it definitely triggered fatigue after I’d rest at the tilt angles that trigger fatigue.

The awareness of the tilt test and that delayed fatigue onset were the 2 useful pieces of information I got from the cfs support group I attended 3 times. I accepted my diagnosis quickly as I’d accidentally been doing my own tilt table tests with the inversion table. I also quickly realised that regularly whinging about the condition in a support group of people who accepted that they weren’t going to recover from something that seemed treatable wouldn’t help me.

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