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

[Jesse2233]

I haven't seen this question posed, so here goes. Which researcher has the most compelling evidence for their theory?

Let me know if I should add anyone major I'm forgetting

 

[Alvin2]

Whoever is proven right.
If we knew the answer then the research would not need to be done because we would already have the disease mechanism.
As for who do i think will find the answer its Ron Davis and the OMF because they have the best experts and access to technology and the drive to follow the evidence wherever it leads at a rapid clip. Not to mention access to all FDA approved drugs, even those that never made it to market.

Theories are a dime a dozen but the proof is in the pudding

 

[Gijs]

A single cause or mechanism for ME, CFS or POTS will never been found. It isn't one disease. I think they never find anything. This disease is invisable for researchers with the actual medical knowledge. You can only find something you are looking for.

 

[Frustrated]

I don't believe any theory doesn't involve viruses. If viruses aren't the cause of ME/CFS then why can most of us trace our onset back to an acute viral illness?

 

[Manganus]

One could suspect that several answers will turn out to be correct, like, maybe:

• autoantibodies
• cell danger response
  
• general mitocondrial dysfunction
• microglial inflammation
  
• brain / CNS dysfunction
• ANS / vagal dysfunction

And "stress" might be involved too.

But I would prefer to wait and see for at least a few years more, before I start guessing.

 

[AdamS]

I'm not sure, but I voted Davis just because the guy is a legend haha!

All researchers mentioned have some cool/logical ideas which are more than welcome, anything that can get us closer to an answer is positive and i'm extremely grateful that people are investing their time in trying to help us! I quite like the work of Armstrong in Australia and Will de Vega which I don't think are on the list.

One thing I wonder is how close we are or how long it will be until we have a treatment that can reliably help us. Even though i've been feeling a little better recently, I still find it extremely hard mentally to get through each week. I liked the way Jay Goldstein rapidly tested treatments, this illness is so brutal that it needs something that, I guess we need to find a mechanism first though before we know the best treatments to test! I just hope it's sooner rather than later.

 

[helperofearth123]

Nooo it has to be Drs Mella / Fluge because they are the only ones testing a drug in a large trial! So because I want them to be right they must be right!

 

[Dechi]

I think those choices are not mutually exclusive. I believe in the chronic enterovirus theory, and then the cell danger response and others could just be consequences of that. The enterovirus is the cause, the others are consequences.

 

[arewenearlythereyet]

I don't believe any theory doesn't involve viruses. If viruses aren't the cause of ME/CFS then why can most of us trace our onset back to an acute viral illness?

Not everyone can and its not most ...actually only 50%

 

[msf]

I voted for KDM, as both Hanson and Lipkin´s (as well as Maes´s and his own) work supports the idea of a disturbed gut causing immune issues through microbial translocation. I would vote for Naviaux as well, but the Cell Danger Response theory doesn´t do enough explaining for my liking. What is causing it? It could be being caused by the LPS problem. Of course, what causes the gut issues in the first place? I think KDM has an idea, but it isn´t likely to be a single factor, and therefore none of the others deserve my vote, especially since none of them mention bacteria!

 

[Gingergrrl]

I am probably in the minority but I do not believe that ME/CFS is one single entity and that the people on this board represent a variety of illnesses or subgroups. So for some the cause will be autoimmunity, for some viral, for some bacterial/Lyme, etc. I think the researcher who will most likely solve it though is Ron Davis b/c he is a legend like @AdamS said above and he will stop at nothing short of finding the cause (no matter which direction it may take him) vs. being focused that only one theory is correct for all patients.

 

[Sushi]

I don't really see any value at guessing. Only further research will clarify such questions.

 

[Forbin]

In some of these cases, the researchers have not explicitly stated a hypothesis, but rather have more broadly found evidence of odd things occurring in patients with ME/CFS. For instance, I think the immune patterns found by Columbia are more in the realm of "biomarkers" of some unknown process related to the disease rather than a theory of what is causing the disease itself. These are still important findings, since the underlying disease mechanism remains so elusive.

Likewise, Fluge and Mella, have been very circumspect about whether their findings suggest antibodies, autoanitbodies or some other process that is somehow being moderated by Rituximab.

There's also a difference between having a compelling hypothesis and having compelling evidence for that hypothesis.

 

[Wishful]

I don't believe any theory doesn't involve viruses. If viruses aren't the cause of ME/CFS then why can most of us trace our onset back to an acute viral illness?

I didn't, as far as I know, have any viral infection when this started. It started as what was clearly a type IV food sensitivity to oranges. I managed to stop the t-cell reaction after 2.5 years, but the symptoms remained, which I only recently realized were consistent with CFS.

My guess is that it's not a viral trigger, it's an immune system (t-cell) response that triggers it. Viral infections are just the most common trigger for the t-cells. Did anyone here start with some other immune system trigger, such as tissue damage?

I'm not casting a vote since I don't know enough and I think it's not as simple as one answer. I do think that the viral research will just show that it's just one trigger among many. The vagus nerve hypothesis seems really unlikely to me. I doubt that biotoxins were involved in my food sensitivity either.

 

[ljimbo423]

I would vote for Naviaux as well, but the Cell Danger Response theory doesn´t do enough explaining for my liking. What is causing it? It could be being caused by the LPS problem. Of course, what causes the gut issues in the first place? I think KDM has an idea, but it isn´t likely to be a single factor,

I think it is the LPS that is causing the cell danger response. What caused my gut issues were about 40 courses of antibiotics, a high sugar, high junk food diet, excessive drinking, and a VERY high stress life, over many years.

I think few people could escape severe dysbiosis, leading to a leaky gut, under these circumstances. I was tested, so I am certain I have severe dysbiosis and it's not a giant leap to think I also have a severe leaky gut.

 

[halcyon]

Not everyone can and its not most ...actually only 50%

It's more than that.

Onset Survey 1,000+ patients 75.6%: infection alone or infection + 1 or more factors: environmental exposure, physical trauma, vaccinations, other stressors Vernon SD. CFIDS of America

 

[Gingergrrl]

I'm not casting a vote since I don't know enough and I think it's not as simple as one answer.

I did not cast a vote either as I have no clue which one will end up being the correct answer and still feel there will be many different illnesses/subgroups vs. just one cause or trigger.

It started as what was clearly a type IV food sensitivity to oranges.

When you say "type IV food sensitivity to oranges", do you mean stage four anaphylaxis or something different?

 

[Valentijn]

I am probably in the minority but I do not believe that ME/CFS is one single entity and that the people on this board represent a variety of illnesses or subgroups.

My feeling is similar, except I think that different causes may be giving us the same symptoms which likely share a similar ultimate pathology. So I think we have a shared mitochondrial SNAFU, but with different causes - genetic, infectious, (auto)immunological, etc. Hence most of the listed researchers are probably right, to some extent.

Ron Davis' metabolic approach seems to be the most on-track to uncovering such a pathology, so he gets my vote.

 

[heapsreal]

I will say it, seen as no one else will.

Defreitus, Mikovits/Ruscetti, alter/lo and Montoya on further research into possible retroviral causes. Id even add Dan Peterson for his clinical experience and his own biobank.

 

[arewenearlythereyet]

It's more than that.

We could probably pick out several surveys that show that viruses may or may not be more prevalent and these will vary as a result of different selection criteria. My own figures come from the number of sudden onset vs gradual onset.

My point is there are a load of non sudden onset people that don't fit the virus model and you can't ignore these people.

The fact that there are so many non sudden onset people makes me believe that viruses may only be one trigger of many that could result in the same condition in the end.