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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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POLL: Which ME/CFS researcher has the most compelling evidence for their theory?

POLL: Which ME/CFS researcher has the most compelling evidence for their theory?

  • Drs Naviaux / Davis - cell danger response

    Votes: 26 31.7%
  • Drs Chia / Hyde / Ramsay - chronic enterovirus

    Votes: 8 9.8%
  • Prof De Meirleir - LPS from gram negative bacteria

    Votes: 3 3.7%
  • Drs Mella / Fluge / Scheibenbogen - autoantibodies

    Votes: 15 18.3%
  • Dr Van ElZakker - vagus nerve dysfunction

    Votes: 1 1.2%
  • Dr Younger - microglial inflammation

    Votes: 0 0.0%
  • Dr Hornig - immune autoinflammation

    Votes: 1 1.2%
  • Dr Shoemaker - biotoxins

    Votes: 0 0.0%
  • Drs Lerner / Montoya - chronic herpes family virus

    Votes: 3 3.7%
  • Dr Goldstein - brain / CNS dysfunction

    Votes: 2 2.4%
  • Someone else (write in)

    Votes: 1 1.2%
  • No one

    Votes: 2 2.4%
  • I don't know

    Votes: 20 24.4%

  • Total voters
    82

halcyon

Senior Member
Messages
2,482
My CFS doctors has described to me several patients of his, who have textbook CFS presentation and meet several CFS diagnostic criteria, that had their CFS be triggered and started by physical trauma (broken legs, car accidents, whiplash, falling off ladders, etc). It's hard to believe but true. The only thing I can think of they share with typical cfs patients is that they likely have had various viruses and infection in the past, but from which they had recovered completely.
Physical trauma can provoke viral disease. This is already known to occur with enteroviruses, as in provocation poliomyelitis.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
@GreyOwl and @Wishful How would this (type IV hypersensitivity) compare to an IgE allergic response or to a mast cell response? What symptoms do you get when you eat an orange @Wishful and are they immediate or delayed?

There's really not much in common between the two types, aside from both being a reaction to a chemical trigger. Type IV takes 48-72 hrs for symptoms to show up, whereas type I allergies are fairly immediate. One alternative medicine allergist wanted to do scratch tests for my type IV reaction. I asked how that would work when it took 48 hrs to do anything, and it didn't cause histamine bumps. He couldn't answer that, but insisted it would work. I didn't bother booking a test.

The first few times I had a severe reaction, it seemed exactly like a regular flu, which shares some symptoms with CFS. The severity gradually declined from full flu-like, but still seemed the same. I spent years describing it to doctors as 'flu-like symptoms'. I assumed it was some kind of chronic t-cell-mediated inflammation. In retrospect, I realized that I had had very slight but consistent reactions to oranges since at least early 20's. It was just a few sneezes and a slight feeling of a cold coming on, lasting only a day or so, so I just wrote it off as regular colds and a very good immune system.

I no longer have reactions to oranges...I think. The type IV sensitivity vanished after a typical bout of food poisoning (spoiled coconut milk in curry). I'm just avoiding citrus, cherries, and other similar fruit just in case the sensitivity might possibly reoccur.

If you were wondering if you were having symptoms of type IV sensitivity, for me they were identical to having a flu, and they started with a precise and consistent 48 hr delay (+/- a few minutes). I think it's hard to mistake for anything else. The delay did change abruptly twice (to 17.5 and then 23.6 hours), after unusual circumstances, but stayed +/- a few minutes. None of the papers on type IV sensitivity mentioned delay changes, but there's not much research in that area, so it's still mysterious.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I'm not sure why there's so much insistence on viruses being involved. Physical trauma will trigger the immune system to full alert without any viruses being involved. I think it's the cytokines or other chemicals released by the immune system which triggers CFS, which doesn't require viruses. Viruses are just a more common trigger, and an easy target for research funding.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
I'm not sure why there's so much insistence on viruses being involved. Physical trauma will trigger the immune system to full alert without any viruses being involved. I think it's the cytokines or other chemicals released by the immune system which triggers CFS, which doesn't require viruses. Viruses are just a more common trigger, and an easy target for research funding.
People get wedded to their theories. This is why my response to this thread was whichever theory gets proven correct.
 

Basilico

Florida
Messages
948
Physical trauma will trigger the immune system to full alert without any viruses being involved. I think it's the cytokines or other chemicals released by the immune system which triggers CFS, which doesn't require viruses.

This is basically the Naviaux cell danger hypothesis, which I think makes a lot of sense. It also would explain PEM after physical exercise as basically being a cytokine storm in reaction to the physical stress.
 

Gingergrrl

Senior Member
Messages
16,171
There's really not much in common between the two types, aside from both being a reaction to a chemical trigger. Type IV takes 48-72 hrs for symptoms to show up, whereas type I allergies are fairly immediate.

The first few times I had a severe reaction, it seemed exactly like a regular flu, which shares some symptoms with CFS.

If you were wondering if you were having symptoms of type IV sensitivity, for me they were identical to having a flu, and they started with a precise and consistent 48 hr delay

@Wishful, thank you for taking the time to explain this and your reactions are 100% different than what I experienced in 2015 which were immediate anaphylactic reactions to food/smells. They either occurred within seconds of eating the food or sometimes were delayed by up to an hour (or started out minor and then worsened to a full reaction within the hour). My reactions were never flu-like, and actually no part of my illness has been flu-like, (except for when I actually had mono in 2012).

People get wedded to their theories. This is why my response to this thread was whichever theory gets proven correct.

I also do not believe that it will be just one theory vs. several different triggers and different treatments for different sub-groups or even different illnesses altogether.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
I also do not believe that it will be just one theory vs. several different triggers and different treatments for different sub-groups or even different illnesses altogether.
Certainly possible, it may be that several triggers leads to the ME/CFS cascade, or it may be a specific cause or it may be several diseases or even something else. However my statement still stands, if one is found and only applies to a subset of patients the other patients will still not benefit from gut feeling theories, treatment comes from figuring out the mechanism and targeting it or luck (such as stumbling onto a drug) or wide net investigations.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
@Wishful, thank you for taking the time to explain this and your reactions are 100% different than what I experienced in 2015 which were immediate anaphylactic reactions to food/smells.

I'm glad that it helped remove confusion. This disease has too much confusion involved (not just in our brains). I started a thread about 'unrefreshing sleep' because I really had no idea what that meant. Based on the feedback, I think it should be 'fatigue that isn't reduced by sleep'. Calling the symptoms 'unrefreshing sleep' implies to me that sleep quality is a symptom, whereas the actual symptom being referred to is fatigue.

This board has cleared up a lot of confusion for me.
 

Groggy Doggy

Guest
Messages
1,130
It's much better to look at non ME findings, things we know for sure, and see what metabolic theories also apply to ME.

Why reinvent the wheel?