Details on NIH study

Sasha

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One of my fears about this study is that the FMD and Lyme control groups were bolted on because someone wants to research FMD and Lyme and needs to compare them to healthy controls. This study would allow them to do that for half the (considerable) price because it includes a healthy control group.
 

Simon

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As for the suggestion of post-ME patients, that wouldn't work because everyone would say there's no such thing.
Just seen how long this thread has grown so please excuse me for replying now rather than reading another 80 posts to see if this has been covered

To clarify:the point isn't to use post-ME patients, which would be controversial.

Instead, the idea is to use post glandular fever patients ie people who have recovered from a nasty infectious illness but didn't go on to develop mecfs (there is good evidence from prospective studies that some people do get mecfs after glandular fever) - instead of post-Lyme. It's a much more relevant control group than trying to drag in another controversial illness into the mix.
 

Bob

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There were better ways to narrow the focus for the study. They could have selected patients who also had intestinal complaints, or those who featured PEM, or OI for that matter.
Yes, I've just been thinking that it would be helpful to include such subsets for ME patients in the study. e.g. they could have 20 patients with (as you suggest) pronounced OI or IBS, and 20 with pronounced pain, and 20 without pain or any other complications. That would probably be more helpful than a post-Lyme control.

There are many threads discussing the problems around classifying me/cfs as a post-infectious illness on PR going back ten years or so. Many of those threads ended up with a consensus that the so-called trigger infection may have been secondary, or the consequence of some early pathological event.
Yes, an infectious trigger might be a distraction. I had an apparent infectious trigger but it was just a fluey-type infection so it wasn't tested for or recorded in my medical notes. Jonathan Edwards has discussed this issue and pointed out that the infection might not have been the trigger for the illness, which might have already have been developing, but it might just have been the event that made the symptoms obvious. In which case, the infection precipitated the symptoms rather than triggered the illness. Having said that, I don't object to them using a post-infection cohort.
 

Bob

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My main objection is that they weaken the statistical power of the study. A few of the dodgier investigators have engaged in such behavior before, using multiple control groups. The result is that there needs to be a huge difference in a lab result between the patients and a control group for it to have statistic significance. Anything more nuanced or representing a subgroup is completely lost. And depending on the ethics of those investigators, they will gloss over the lack of power and present the study as a straight-forward null result. I do not want them to have the opportunity to do that again.
The idea behind a control group is to control for variables. I don't think you can deny that a Lyme group potentially introduces new variables instead.
Thanks, Val, I think these points are quite convincing.
And thanks to everyone else for being so patient with me, especially @duncan.

I'll be handing out the special "Convincing Bob" prizes later :trophy::trophy::trophy::star::bouquet:
 

Scarecrow

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Yes, an infectious trigger might be a distraction. I had an apparent infectious trigger but it was just a fluey-type infection so it wasn't tested for or recorded in my medical notes.
Just to weigh in, I had very clear (with hindsight) symptoms of ME for several years prior to getting the 'final' trigger which was a chest infection and my symptoms had escalated significantly in the preceding months. The chest infection was the worst I'd ever had.

The Dubbo study observed an association between severity of initial infection and length of infection post-infection illness. Rather than a more severe infection being more likely to lead to ME, what if the pre-existing illness causes an unrelated infection to be more severe?
 
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viggster

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are they cured or in remission
The point @Bob has repeatedly made, and that I agree with, is that the important characteristic of these patients is they are asymptomatic. It doesn't matter if they are "cured" or in remission. What matters is that they feel 100% healthy. Comparing ME/CFS patients with many symptoms to Lyme patients without symptoms could help reveal what immune or other abnormalities are causing symptoms in ME/CFS.
 

duncan

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If they will be comparing immune profiles, it absolutely matters whether or not a control has an infection, @viggster.

I doubt they will merely see how symptoms stack up. I can probably already tell them how that would likely play out. I'm sure others here can as well.
 

BurnA

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Link to study website here

I presume this is just an indication of tests not a full list ? I ask because there are no blood tests pre or post exercise ? It seems odd but I am not a doctor nor a scientist so i am not really qualified to say whether it is or not.
 

Comet

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I was just thinking (and we know how that can go...) that if this study can find even just a couple of small anomalies with us, it may force doctors to start taking us more seriously.

If there start to be indicators of real illness and disease in ME/CFS patients (gasp!), then doctors will, at least, have to do more testing and symptom treating, even if it is just to cover their own butts.

If we have more indicators of real disease and are still mocked, abused and ignored, the medical community would be setting itself up for malpractice (in a blatant way, as opposed to now, which would be difficult to prove).
 

Forbin

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Dr Bell returned to his original cohort of young patient who contracted ME from an epidemic. Many of them considered themselved recovered. But interestingly, Dr Bell found that they had adapted their lifestyle to their disease and they were nowhere near recovered. Many did not have fulltime employment. Others could not sustain a normal social life. And so on.

Definition of recovery is difficult without biomarkers, just like leukemia remission establishment is difficult to determine without blood test and a bone marrow biopsy.
I recall Dr. Bell saying that in his book "The Doctor's Guide to Chronic Fatigue Syndrome" (1994). If I remember correctly, he said that something like 25% said they were doing better after several years, but they were clearly not fully recovered.

However, in a talk that Dr. Bell gave four months ago in Tustin, CA, he was pretty emphatic that 5% of patients did recover. He didn't know why, but he was certain that they genuinely had ME/CFS and then recovered.

Question: "The 5% that may be recovered... since there isn't a lot of testing done yet, could it be that those 5% don't even really have SEID, or CFIDS, or Iceland Disease or whatever you want to call it?"

Dr. Bell: "Yeah, but I don't think so."

Question: "You do think that 5% might actually recover?"

Dr. Bell: "Oh, yes.

Question: "Oh, really?"

Dr. Bell: "Yeah. That's something that I've looked at very intensely over the years... I wanted to know what did they do that was different - that caused them to recover. Did they exercise more, or less; did they take more vitamins, less vitamins; did they eat better?

"Now Lyndonville is a very small area, and I was the only physician in the area - so I kind of had a lock on these patients - and I was nice to them - I tried to be nice. And after looking at this, about half of the patients ate terribly. You know, they'd go to McDonald's every once in a while - and the other half ate meticulously - very good foods - and I didn't see any difference. Half of them had lots of vitamins, half of them did not... So I couldn't tell.

But what I was quite sure about was that they had the same illness. So, I had lots of ways of measuring the severity, measuring the complexity of the symptoms. For example, I was very intent on measuring the degree of lymph node tenderness. That's an unusual symptom - so that if you have rheumatoid arthritis, that's not one of the things that would happen. So I'm quite sure they all had ME/CFS and there was a subset that clearly did get better."

Question: And you never had any inkling of what it was? [That caused them to recover]

Dr. Bell: Not an inkling - -

[See at 46:52 in the video. He had mentioned the 5% recovery rate earlier in the lecture as well.]

 
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CBS

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I appreciate that this is coming out of left field (although I'd argue it is relevant), but did the NIH really pick THE one doctor who comes off as the world's most pretentious douche bag to head up their all important "we're on your side and we're going to solve the CFS/ME challenge as a team" study?

From this video, I'd suggest that the answer to that question is obvious: http://www.rheumatologynews.com/spe...e-model/e913134880916685f3005dac5459ab88.html

Ciao
 

TiredSam

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I appreciate that this is coming out of left field (although I'd argue it is relevant), but did the NIH really pick THE one doctor who comes off as the world's most pretentious douche bag to head up their all important "we're on your side and we're going to solve the CFS/ME challenge as a team" study?

From this video, I'd suggest that the answer to that question is obvious: http://www.rheumatologynews.com/spe...e-model/e913134880916685f3005dac5459ab88.html

Ciao
I could only manage the first 2-3 minutes of that video, just can't watch any more of the guy than that. He really has to go, if only 6 months ago he was espousing such complete bollocks. So what is the obvious answer to the question? I seriously am not going to watch that video to the end.
 

Justin30

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Wallit is an absolute joke...

I ignored and ignored and cant anymore.......

I am so angry he is involved in the NIH Study this is not right!!!!

Scientis from harvard Dr Louise Oaklander is finding SFN as being a causal link to FM and depending on the degree of severity ot seems as though the SFN can be systemica and lead directly into the brain through the nerve demylination......