Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

[Bob]

post-exertional sickness

I like that description. It's much more appropriate.

 

[Bob]

Do we know why they are using "a stationary bike exercise test twice" instead of a 2-Day CPET? If we could get them to use a 2-Day CPET and drop patients from the study that did well on day 1 and day 2, wouldn't that solve our selection problems? Better yet, aren't there already patients that have had these tests done that could be referred from expert clinics? Is this something that we could all agree upon and sign a single letter or petition requesting? If they would do this, it would benefit Dr. Nath as he'd see a smaller flow of negative email and maybe start getting more thank you email. Am I missing something? I'm very ill and can't read or write very much. I've been sick for 33 years after mono and severe strep throat and I would have met the CCC criteria when I got sick in 1983, had it existed. I'm bedridden now, but I would have done a 2-Day CPET for research during certain stretches of those first few years of illness.

Hi Laurie, as far as I'm aware, they've never mentioned that they are carrying out a two-day CPET test. They are conducting two exercise tests, but not necessarily CPET tests. I suspect they weren't aware of the interesting results of the CPET tests when they designed the study. It's an interesting idea to categories the participants via a 2 day CPET test, but the test would have to be validated on a much larger scale before they could use it to include/exclude patients. (So far the 2 day CPET studies have been small and the results inconsistent.) But they could potentially use the test to usefully categorize patients, if it proves to be reliable.

 

[Laurie P]

Hi Laurie, as far as I'm aware, they've never mentioned that they are carrying out a two-day CPET test. They are conducting two exercise tests, but not necessarily CPET tests. I suspect they weren't aware of the interesting results of the CPET tests when they designed the study. It's an interesting idea to categories the participants via a 2 day CPET test, but the test would have to be validated on a much larger scale before they could use it to include/exclude patients. (So far the 2 day CPET studies have been small and the results inconsistent.) But they could potentially use the test to usefully categorize patients, if it proves to be reliable.

Thanks Bob. I didn't know that the studies were small and the results were inconsistent.

 

[waiting]

Do we know why they are using "a stationary bike exercise test twice" instead of a 2-Day CPET? If we could get them to use a 2-Day CPET and drop patients from the study that did well on day 1 and day 2, wouldn't that solve our selection problems? Better yet, aren't there already patients that have had these tests done that could be referred from expert clinics? Is this something that we could all agree upon and sign a single letter or petition requesting? If they would do this, it would benefit Dr. Nath as he'd see a smaller flow of negative email and maybe start getting more thank you email. Am I missing something? I'm very ill and can't read or write very much. I've been sick for 33 years after mono and severe strep throat and I would have met the CCC criteria when I got sick in 1983, had it existed. I'm bedridden now, but I would have done a 2-Day CPET for research during certain stretches of those first few years of illness.

I asked this question during the presentation and I think Dr. Zaher Nahle (of SolveCFS) said that Dr. Nath would answer the questions after the webinar...? I don't see them posted yet.
@Bob

 

[waiting]

Thanks Bob. I didn't know that the studies were small and the results were inconsistent.

@Bob, Yes, I agree the studies were small (funding), but I was not aware the results were inconsistent...? It was my understanding that Stevens et al results were replicated by both Dr. Vermoulen & Dr. Betsy Keller -- could you clarify? Thanks.

 

[Bob]

Thanks Bob. I didn't know that the studies were small and the results were inconsistent.

I might be wrong, but that's my understanding of them.

 

[Laurie P]

I asked this question during the presentation and I think Dr. Zaher Nahle (of SolveCFS) said that Dr. Nath would answer the questions after the webinar...? I don't see them posted yet.

I'm also waiting to see if/how Dr. Nath answers our questions. I asked if he would collaborate with Dr. Ron Davis and if so how. I also asked him what he was going to do for severe patients who desperately need help NOW!

 

[Bob]

@Bob, Yes, I agree the studies were small (funding), but I was not aware the results were inconsistent...? It was my understanding that Stevens et al results were replicated by both Dr. Vermoulen & Dr. Betsy Keller -- could you clarify? Thanks.

I can't remember the finer details now but, some time ago, I compared the results between two of the main published studies, and the outcomes weren't consistent. I raised the issues at the time and no one on the forum responded. I've rarely seen it discussed by anyone, if ever. In any case, such small studies are not robust or reliable, and we need large validation studies.

 

[Valentijn]

If we could get them to use a 2-Day CPET and drop patients from the study that did well on day 1 and day 2, wouldn't that solve our selection problems? Better yet, aren't there already patients that have had these tests done that could be referred from expert clinics?

Or at least separate the other results of the two groups, depending on their CPET results.

 

[Sidereal]

My disabling symptoms are orthostatic intolerance and muscle weakness not "fatigue"

 

[Valentijn]

(So far the 2 day CPET studies have been small and the results inconsistent.)

Results have been consistent so far, regarding VO2max on 2-day maximal CPETs, as far as I've seen. If there's inconsistency, it's probably with submaximal and/or single day tests, or with methodology in failing to encourage maximal exertion. But those are not proper 2-day maximal CPETs.

 

[BurnA]

My disabling symptoms are orthostatic intolerance and muscle weakness not "fatigue"

Yes i am a little bit worried Dr Nath made no reference to other symptoms other than fatigue.

 

[MEPatient345]

I think asking patients to do 2 day CPETs is not the right way to go and is almost unethical.. It can cause a large decrease in function, in my own experience. Patients who take part in this study will be volunteering at huge personal cost in time and effort, and I don't think they should be put at risk of increasing their disability. I don't know if the other exercise tests they have proposed would be as potentially harmful.. CPET requires you to work to your maximum capacity.

 

[Gijs]

Yes i am a little bit worried Dr Nath made no reference to other symptoms other than fatigue.

Dr. Nath was talking about POTS and autoimmunity too. So he knows. His study is very interesting.

 

[duncan]

His focus was clearly and predominately on fatigue.

His study may prove interesting provided he is studying the right thing in the right people, i.e. the symptom cluster that is inadequately and inappropriately labeled CFS, and not fatigue in a fatigued cohort that may or may not present with peripheral symptoms.

 

[duncan]

I had discussed in a different thread that I have a family member with Andersen-Tawil Syndrome. ATS is characterized by a very broad symptom cluster. Those symptoms have been divided neatly into three broad categories: periodic paralysis, cardiac issues, and physical abnormalities. Each one of those three categories has many elements.

So, a lead investigator for a CFS study repeatedly referring to CFS as fatigue is in someways like a newly minted ATS expert calling a singularly groundbreaking ATS study a cardiac study - yes, it certainly would involve the cardio aspect in ATS patients, but the FOCUS is alarmingly off. This researcher would concern me because it would seem to me that he is starting this effort off without benefit of an adequate understanding of the whole of ATS. He is not exploring the entire disease as a disease - rather, he is poking at one single aspect, one symptom. This is worrisome on many levels. I would worry that he would not enroll people that should be enrolled, not look fully at the other equally vital symptoms (one of which could leave his patients paralyzed), and ultimately miss the mark.

The parallels with an investigator pigeonholing a CFS study as a fatigue study is equally alarming.

 

[Bob]

Yes i am a little bit worried Dr Nath made no reference to other symptoms other than fatigue.

I found it irritating that he frequently referred to the illness as equating to 'fatigue', but I don't think we should read much into it. Everyone who is unfamiliar with ME/CFS thinks it's mainly about 'fatigue'. He's new to the field and will be learning as he goes. What matters, as @duncan says is that they get the right cohort. And they have a team of people overseeing the entry process. When the NIH staff meet the patients face-to-face they will quickly learn about ME, and hopefully the NIH will develop a personal interest in the illness and the patients, just as Lipkin did.

 

[BurnA]

I found it irritating that he frequently referred to the illness as equating to 'fatigue', but I don't think we should read much into it. Everyone who is unfamiliar with ME/CFS thinks it's mainly about 'fatigue'. He's new to the field and will be learning as he goes. What matters, as @duncan says is that they get the right cohort. And they have a team of people overseeing the entry process. When the NIH staff meet the patients face-to-face they will quickly learn about ME, and hopefully the NIH will develop a personal interest in the illness and the patients, just as Lipkin did.

Yes I hope so Bob.

My Impression is that Nath has got a lot of feedback from people within the NIH but maybe less so from outside.

I don't doubt his capability and I am sure his intentions are the best. However, i think he has some way to go before he understands this disease. I hope the outside influence doesn't come too late.
I understand that this is just one project for Nath and not his lifelong goal, however when he says he isn't going to become an ME/CFS expert i wonder what he means. Maybe he doesn't realise that to be an expert in ME/CFS doesn't take too much time and is about as far from being an expert in any other disease as you can imagine. The worlds knowledge on ME/CFS is probably all contained on these forums.

 

[Bob]

Results have been consistent so far, regarding VO2max on 2-day maximal CPETs, as far as I've seen. If there's inconsistency, it's probably with submaximal and/or single day tests, or with methodology in failing to encourage maximal exertion. But those are not proper 2-day maximal CPETs.

I definitely remember inconsistencies in the two leading studies that I looked at which looked at two-day maximal CPET tests. I won't be able to find my comments/notes because I made them ages ago. But I've just looked up Snell et al. 2013, and there was no difference between patients and controls for VO2 peak over two days. I think that's inconsistent with other studies, isn't it?

Also, see this...

In some ways the findings are unexpected, as it was the same group's earlier finding of a substantial drop inVO2 max on the second test that caused such a buzz amongst patients. And the big drop in output at VT wasn't seen in a study (albeit a small one) by a separate research group, though a smaller drop was seen for VT, and VO2 max in a study presented at an IACFS conference. I asked Chris Snell if he was surprised by the finding. "No", came the reply: the initial study was small making the findings less robust, and he said that a much bigger effect on VT than VO2 max has been seen in the clinic too.

 

[Sasha]

I definitely remember inconsistencies in the two leading studies that I looked at which looked at two-day maximal CPET tests. I won't be able to find my comments/notes because I made them ages ago. But I've just looked up Snell 2013, and there was no difference between patients and controls for VO2 peak. I think that's inconsistent with other studies, isn't it?

The IOM report also noted inconsistencies in which particular measures showed worsening on Day 2, but there's an overall general worsening (if you see what I mean).

But Nath, in the webinar, said he's not seeking to replicate that work - he wants to provoke and measure a neuro-immune reaction and take it to bits, IIRC. You don't need maximal exercise to do that.