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

[Valentijn]

Well, @Riley, I could tell everyone that I was prescribed, personally, this therapy by two clinicians on the list, but that's just hearsay.

The statements would have to come from a third party to be hearsay. If it's your personal account of what you heard the doctors say, it isn't hearsay

 

[duncan]

Okay, I am trying to do the math, but failing. I accept that my word is better than hearsay.

While I am talking brain damage, I would be interested in the cognitive tests they will employ. Where possible, pwME being tested should see if they can dig up an old IQ test to act as baseline - but not let the testers know. The testers should provide an estimate of pre-morbid IQ, in addition to an estimate of the current IQ; it will be good to keep them on their toes.

 

[BurnA]

Well, @Riley, I could tell everyone that I was prescribed, personally, this therapy by two clinicians on the list, but that's just hearsay.

Would you consider yourself a valid patient for the study ?

I understand the point about these clinicians and the severe consequences of poor patient selection but how likely is it that someone who doesn't have me/ cfs will attend these clinicians, be prescribed exercise, not get better and not have me/cfs ? Can we estimate that ?

 

[duncan]

@BurnA, if you agree that PEM is a cardinal characteristic of ME/CFS, and you agree that exertion can trigger PEM, would you recommend GET on an on-going basis to pwME? Recommend perpetually pushing the envelope, even if it's only a little bit more each time?

Of course not. Why? Because you understand the risk to the patient. If a doctor does not understand that risk, then that physician may not fully understand the crippling nature of ME/CFS. That, imo, is only likely if clinicians THINK they are dealing with pwME, when, in fact, they are not.

Any clinician that does not appreciate that risk should not be have a part in populating this NIH study imo.

 

[BurnA]

@BurnA, if you agree that PEM is a cardinal characteristic of ME/CFS, and you agree that exertion can trigger PEM, would you recommend GET on an on-going basis to pwME? Recommend perpetually pushing the envelope, even if it's only a little bit more each time?

Of course not. Why? Because you understand the risk to the patient. If a doctor does not understand that risk, then that physician may not fully understand the crippling nature of ME/CFS. That, imo, is only likely if clinicians THINK they are dealing with pwME, when, in fact, they are not.

Any clinician that does not appreciate that risk should not be have a part in populating this NIH study imo.

But if their understanding of this illness is so fundamentally flawed how are they considered experts and why was there no more objection to them to begin with ?
That's a general question.

My thoughts are that some people may prescribe exercise, call it GET, but not reallly understand that GET means push yourself.
I don't know, it is baffling to me how any me/cfs clinician could prescribe exercise.

 

[halcyon]

I don't know, it is baffling to me how any me/cfs clinician could prescribe exercise.

It is, but they do. Lapp was promoting it during CDC grand rounds. Klimas even has a video promoting exercise for CFS patients.

 

[viggster]

It is, but they do. Lapp was promoting it during CDC grand rounds. Klimas even has a video promoting exercise for CFS patients.

I do very small amounts of exrercise. Does that disqualify me from the study? (if I do too much, I get PEM.)

The long post above talking about supposed unpublished research assumes the new study will use Fukuda criteria, where it has been clarified many times the patients must meet CCC criteria.

 

[duncan]

@viggster, your question might suggest that you are missing the point. We are not discussing exertion per se, or exercise; we are discussing graded exercise with no cap that does not seem to recognize a threshold for PEM.

For instance, I have a theshold I observe for physical exertion. It is a learned thresh hold. It was learned the hard way, many times. Beyond that point I risk PEM, and I know this. So I observe that mark.

GET discards the notion of pacing and living within one's learned envelope. As a therapy it seems indifferent to PEM; or it suggests it will remedy PEM or help mitigate PEM. The reality is it can lead to PEM. We know this.

 

[halcyon]

I do very small amounts of exrercise. Does that disqualify me from the study? (if I do too much, I get PEM.)

No, you'd actually be more qualified to be in the study because the study requires one to be able to tolerate minimal exercise. That's not the point. The point is are we able to generalize results from a patient like you and apply it to a patient that can't even get out of bed.

 

[Riley]

the notion of pacing and living within one's learned envelope

I can tell you for a fact that this is what Dr. Lapp reccomends. He uses these exact words.

 

[viggster]

No, you'd actually be more qualified to be in the study because the study requires one to be able to tolerate minimal exercise. That's not the point. The point is are we able to generalize results from a patient like you and apply it to a patient that can't even get out of bed.

Nath addressed the issue of bedbound patients during the NIH teleconference a few weeks back. Like many patients, I have been fortunate to go from bedbound to mostly housebound over the past few years. I don't think this is unusual.

Also, Ron Davis is studying sevrere patients, while NIH will be studying moderate patients. The two studies can complement each other.

 

[BurnA]

I can tell you for a fact that this is what Dr. Lapp reccomends. He uses these exact words.

So there's nothing to worry about then ?

 

[Bob]

Klimas recommends and prescribes exercise as well, but she says it's not an enforced graded exercise program, and it's not intended as a treatment, but it's a gentle program to address general conditioning and health. I'm not entirely comfortable with it, but my understanding is that it's a million miles away from the PACE-type stuff.

I have an enormous respect for Klimas: Looking at her research program, there's no way she could consider ME as anything other than a very serious biomedical illness. Her research program is fascinating. She has very ill patients visit her, so I think she's very familiar with the illness and its impact. If we can't trust someone like Klimas then we're doomed.

 

[Justin30]

Nath addressed the issue of bedbound patients during the NIH teleconference a few weeks back. Like many patients, I have been fortunate to go from bedbound to mostly housebound over the past few years. I don't think this is unusual.

Also, Ron Davis is studying sevrere patients, while NIH will be studying moderate patients. The two studies can complement each other.

Now only if the NIH gave Ron Davis Money to research than it would not smell so fowell....

I just do not understand why the NIH wants more people to be apart of studying this disease yet you have a team of absolute experts in many fields trying to help...and oh by the way we the NIH dont want to help you out OMF......

How does this look like when attracting new talent to the field when, Standford, Berkley, Nobel Prize Leareates, 30 yr ME Vets, etc. Cant get money from the NIH?

Whay kind of example doe this given when OMF openly states they wont fund us.

This really bugs me and should bug many others as well....

If I had the energy and wasnt deteriorating I would be trying to do everything I can about this.

As a patient I want to know why they will not support Ron and his team!

I would hope they have a justified reason and I would like for it to come from Dr Francis Collins as he was the one that made statements about the seriousness.

 

[Riley]

So there's nothing to worry about then ?

No, I would not worry about Dr. Lapp being able to properly diagnose a patient. He is one of the only, if not the only, clinician in America that sees solely CFS and Fibromyalgia patients all day long, and he has been doing so for 20+ years.

 

[Justin30]

No, I would not worry about Dr. Lapp being able to properly diagnose a patient. He is one of the only, if not the only, clinician in America that sees solely CFS and Fibromyalgia patients all day long, and he has been doing so for 20+ years.

He also uses ampligen as well and on one of the documentaries I watched he has treated very, very sick individuals.

 

[Amaya2014]

Thanks @Kati. I'll try to keep an eye out for the CFSAC meeting.

It was difficult to share but 80% of what I have in energy is devoted to caring for my son. I hate wasting energy and pushing to the edge of the PEM cliff for ignorance and dismissive attitudes.

I know this isn't a popular position but I'm truly lost on the Dr. Lapp accusations. I was diagnosed by him and he recommended I average about 3500 steps a day and a max HR of 110. Though he provides info about staying active as much as tolerated for general health...how would his recommendations count as exercise to anyone? Contrast this to my Primary Care Doctor at the time who recommended I participate in a weekly aquatic therapy class and yoga class because they were proven therapy for chronic fatigue and Fibromyalgia?!

Perhaps, he's instructed or made other recommendations to others that said GET or was extremely similar?

So, the doctors that you approve of @duncan, are they prescribing no exercise, work, sexual activity, and any other forms of exertion for their ME/CFS patients?

 

[CFS_for_19_years]

While I am talking brain damage, I would be interested in the cognitive tests they will employ. Where possible, pwME being tested should see if they can dig up an old IQ test to act as baseline - but not let the testers know. The testers should provide an estimate of pre-morbid IQ, in addition to an estimate of the current IQ; it will be good to keep them on their toes.

Your assumption that IQ falls is wrong. Throughout my entire life I've tested as high IQ (member of Mensa, which used my Graduate Record Exam scores as a proxy for their own test). Mensa members supposedly have IQs greater than 140. When I was tested around the age 10 at school, my math teacher confided that I was one of the top three in a class of several hundred.

I came down with ME/CFS in 1990 and had two days of cognitive testing done by an experienced psychologist who did all of this type of testing for a large health group (Group Health in Seattle). The first hour or so was devoted to measuring my fund of knowledge and IQ, for example, discovering the depth of my vocabulary. He asked me to explain various multi-syllabic words. At the end of that battery of tests he estimated my IQ to be 160!

The remainder of the testing (another ten hours or so) were word recall, picture games, puzzle games, etc. I failed poorly on some word recall tests, but my worst test was fitting various shaped blocks of wood into their respective holes in a platform blindfolded, using only one hand. The long time I took to do this indicated that there was evidence of brain damage (what he said). This test had nothing to do with IQ, but with how the brain processes information.

I'm not sure how the testers could estimate someone's pre-morbid IQ. The only comparison to pre-morbid functioning might be to say, this person failed miserably on tests X, Y and Z (not IQ, but cognitive processing), yet their occupation prior to becoming ill was systems engineer, attorney, research scientist, university professor, etc. and these sorts of cognitive problems would be inconsistent with the demands of these occupations.

 

[duncan]

My doctors say learn your limits. Know your thresholds. Exercise within those thresholds. They tell me to pace myself.

Know how far to press that envelope, but don't overdo it

For these doctors, it's not about growing faster, lasting longer, being stronger, walking further. It pacing so as to accomplish things. It is pragmatic to its core. Its instruction on maintaining. In this world, striving to do more, day in and day out, is just a recipe for a crash. Do it too often and that crash could extend a day of PEM into weeks and months. Its a strategy for tight rope walking that allows for things getting done without PEM clobbering you into a pulp.

The thing about PEM is that it isn't restricted to physical exertion. Those NIH investigators need to provoke emotional PEM, and intellectual PEM. Here, muscle fatigue isn't as relevant. Will the NIH even bother looking at these categories? For example, I had seven hours of cognitive testing. 24 hour later I crashed, and it was a doozy; I was down for the count for ten days,. Think the NIH plans anything along those lines?

The IQ test? They should give four hours of testing on Day 1; four hours on Day 2. Then see if there is a drop in performance between the two tests. I'd be willing to bet the IQ between the two days will differ significantly - simply because of PEM. It happened with me.

 

[Kati]

Thanks @Kati. I'll try to keep an eye out for the CFSAC meeting.

It was difficult to share but 80% of what I have in energy is devoted to caring for my son. I hate wasting energy and pushing to the edge of the PEM cliff for ignorance and dismissive attitudes.

I know this isn't a popular position but I'm truly lost on the Dr. Lapp accusations. I was diagnosed by him and he recommended I average about 3500 steps a day and a max HR of 110. Though he provides info about staying active as much as tolerated for general health...how would his recommendations count as exercise to anyone? Contrast this to my Primary Care Doctor at the time who recommended I participate in a weekly aquatic therapy class and yoga class because they were proven therapy for chronic fatigue and Fibromyalgia?!

Perhaps, he's instructed or made other recommendations to others that said GET or was extremely similar?

So, the doctors that you approve of @duncan, are they prescribing no exercise, work, sexual activity, and any other forms of exertion for their ME/CFS patients?

Hi @Amaya2014 Dr Lapp means well, and likely wants you to remain fit and avoid deconditioning. However if you have a hard time to keep up with your daily demands, please consider that your body may not be able to perform at Dr Lapp's level, and you wouldn't be the first one.

3500 steps for one maybe almost nothing, but for others it will cause a crash over and over and over. Or it can be insidious. Also the heart rate threshold might be too high. In my case I have had 3 sets of exercise test, with the first one telling me my threshold was 95. 95 is not high for someone who has POTS (and there are many of us who have POTS) when just getting up raises someone's heart rate to 120. Continually crashing will cause you to decline much faster than if you didn't crash all the time. So the steps and heart rate parameters may be too high even if the doctor tells you it's where you need to be.

Speaking of POTS, have you been tested for orthostatic intolerance? Because getting the appropriate treatment will make a difference in your day to day. You can test yourself at home for this. Ask me if you want to know how.

The best thing you can do is to listen to your body. Save your energy for when it matters most, when you take care of your son. Keep an activity journal/ and symptoms. See what works for you, no one else.

Best wishes, Kati