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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Snow Leopard said:
All but one patient in Ron's severely ill study were negative for EBV,
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That is so strange b/c I have talked to a few people who are in that study (privately and never in a public forum) and they said they were positive for EBV. (But maybe they meant IgG+ vs. IgM+ or I misunderstood something).
 
W

Wonko

Senior Member
Messages
1,467
Location
The other side.
I like the gold nano probe thing, but only results for ME vs controls were given, what about other conditions i.e. is the increased impedance unique on the salt test to ME serum? That is is it likely to be diagnostic of ME or just of "something" is wrong?
 
P

perrier

Senior Member
Messages
1,254
Alvin2 said:
Desperation is an excuse for accepting ludicrous ideas?
Many things are worth trying and something unlikely can turn out to make a difference especially when we don't have a disease mechanism, but justifying nonsense is still not indicated.
And if someone thinks they have discovered something then testing it scientifically is a good idea, legitimate science filters lies from facts. If someone wants to market but avoid testing their "confirmed" treatments then its likely they are selling snake oil and its up to them to prove otherwise.
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Of course ludicrous idea should not be accepted. But a good diet has helped many people, and sometimes has helped their medical condition. I know someone who was given a cancer diagno
Rrrr said:
i agree. what does naviaux need to speed things up? a friend who is at the conference today just asked naviaux during lunch if there is an herb that could be used instead of suramin, and he it is not yet known what herbs will work. and that he expects a cure in 5 yrs. i don't have five years. we need to find out what naviaux needs, and get it to him, so we can speed this up.
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5 years is too long for those in bed around the clock
Unable to walk
 
M

Manders

Messages
21
Hutan said:
I have as much of a problem with the characterisation of ME patients as having been high achievers as I do with the Ester Crawley type comment that we are poor, criminal drug takers. This illness affects high-level sports people at the peak of their fitness as well as the asthmatic nerds.

There just are not enough good epidemiological studies to make well founded statements.

It's highly likely that the ME patients that Naviaux sees are well educated, well resourced people who have the drive to try to understand their illness and get better. It's highly likely that the young poor woman who left school at 15 and is trying to deal with several children under 5 with little family support and then gets ME just doesn't cope, sinks into depression and maybe takes drugs to escape from a horrible reality. That woman is probably not going to be diagnosed with ME, much less be turning up to take part in a clinical trial.

The problem with characterising people with ME on the basis of their character and even intelligence (inevitably with the inference of perfectionism) is that it's then easy to blame the patient and to suggest that it's those morally inferior people over there that get sick.

If people are going to make statements about the personal characteristics of people with an illness, I think it is reasonable for them to back that up with rock-solid epidemiology. I haven't seen any such studies for ME yet. Probably it isn't possible until we can characterise patients with unequivocal biomarkers.
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Ah, thank you for setting me straight on that, I certainly didn't intend to characterize an entire group of patients, and I hope no one thought I was saying every (or even most patients) are extraordinarily intelligent, nerdy, or non-athletic.

You are correct, my wording wasn't clear on that, and I apologize if I offended anyone. It was simply a personal observation of the interactions I've had in person, and reading the incredibly insightful comments and information from others on this site. I have belonged to, and moderated, other disease patient support sites, and there was less scientific discussion on those sites.

I will be sure to refrain from making personal characterizations in the future :)
 
mango

mango

Senior Member
Messages
905
Janet Dafoe (Rose49) said:
Ron put up a slide with a cute photo of @Ben Howell in a hat to thank Patient's for their blood and all their help and involvement!
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