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

[duncan]

I agree about the goal to keep non ME/CFS people from being enrolled, @Sasha.

I don't want to get too bogged down in semantics. But prescribing exercise at all is a dicey thing with ME/CFS. It certainly helps, though, if the patient is monitored.

However, what about just open-ended directions like, "Exercise, or walk, a little each day or week, and each subsequent day push yourself a little more. Not too much, but always with the goal of doing more"?

First, the patient that can do that without eventually crashing may not have ME/CFS in my book.

Worse, what clinician would suggest this if he were really appreciative of what PEM entails? If he is not understanding PEM, then should he be selecting patients for this study? IF he picks patients that fulfill his prescribed activities, aren't they likely to not have ME/CFS?

This is my concern, and I have it about more than one of the proposed clinicians.

 

[Amaya2014]

V

Gill may "look good" on paper but you might want to read more:
http://me-pedia.org/wiki/Fred_Gill
http://www.cfscentral.com/2011/02/training-day.html
Gill spoke at the 2011 SOK meeting on day 1 . (The videos are here day 1 https://videocast.nih.gov/summary.asp?Live=10098&bhcp=1, day 2 https://videocast.nih.gov/summary.asp?Live=10114&bhcp=1)
MassCFIDS has a write-up of the meeting https://www.masscfids.org/more-reso...-qdemystifying-medicine-cfs-is-there-a-virusq

@Denise duly noted..he may very well be a wolf in sheep's clothing. Aargh...so continues the battle to keep an eye open.

 

[Amaya2014]

Historically patients may have gone along with these studies falsely believing they had ME/CFS due to unclear diagnostic criteria. With the current, renewed interest in PEM and more clarity on what the disease is and is not....who are these patients who will undergo this intensive study and possibly pervert the outcome knowing (or doubting) these symptoms really apply to them?

 

[Sasha]

I agree about the goal to keep non ME/CFS people from being enrolled, @Sasha.

I don't want to get too bogged down in semantics. But prescribing exercise at all is a dicey thing with ME/CFS. It certainly helps, though, if the patient is monitored.

I agree that it needs to be done with great care, if at all, and with no illusions about what it's for. Some clinicians seem to be using it to strengthen muscle, where possible, so that less energy is needed to do a certain amount of activity. They don't seem to be using it with the notion that PWME can exercise their way to aerobic fitness, which is what the BPS school assume.

However, what about just open-ended directions like, "Exercise, or walk, a little each day or week, and each subsequent day push yourself a little more. Not too much, but always with the goal of doing more"?

I'd say that's dangerous advice, but do you have reason to think that any of the multi-site clinicians are advising patients to do that?

 

[duncan]

I know that one is, another at the very least used to (and I have no reason to suspect he has changed). And neither of those is Lapp.

 

[duncan]

http://www.drpodell.org/blog/

 

[Riley]

All patients will meet the CCC right? I think it is very unlikely that a patient will meet the CCC and not actually have ME/CFS.

 

[Sasha]

http://www.drpodell.org/blog/

But I hope that the other sites, and the other checks and balances (the new criteria being used, Lipkin, etc.) will be sufficient.

 

[duncan]

@Riley, if a clinician were to confuse exercise intolerance, or the effects of deconditioning, for PEM, then they might mistakenly think a patient satisfies the CCC.

 

[BurnA]

But I hope that the other sites, and the other checks and balances (the new criteria being used, Lipkin, etc.) will be sufficient.

Although Dr. Jones’ main focus is on Fibromyalgia, patients with Chronic Fatigue Syndrome should also benefit from her advice.


Why ? On what scientific basis is the word should employed here ?

 

[geraldt52]

...He answered the question Dr. Nahle asked about bias of researchers. His answer is that the study is designed so that personal bias of individual researchers doesn't matter...

That's the sort of answer that could only come from the splendid isolation of being a government employee.

I wonder if a single person could be found in professional sports, or business for that matter, who thinks that they can devise a game plan so robust that the attitudes of the players wouldn't affect the game...

 

[Amaya2014]

@Riley, if a clinician were to confuse exercise intolerance, or the effects of deconditioning, for PEM, then they might mistakenly think a patient satisfies the CCC.

@duncan I hope by clinician, you mean any run of the day, uneducated or misinformed Doctor? Exercise intolerance and/or deconditioning shouldn't be confused by a ME/CFS specialist. If so, I doubt they deserve the title.

Exercise intolerance is primarily physical and I'm not of aware that persons who experience this would also report cognitive impairment and the other symptoms that define PEM.

Also, many on this site including myself, have reported they were very active or athletic prior to this illness.

 

[duncan]

@Amaya2014 - I could not agree more.

And yet, here we are discussing this.

I am just trying to get my arms around why an ME/CFS specialist would recommend an ongoing gradated course of exercise.

What is problematic for me, of course, is that I would not want any specialist who prescribes exercise despite the spectre of PEM, to populate this NIH study. I am concerned he will populate with his prize patients, i.e., those that adhere to instructions and show improvement. (Eta: and who for obvious reasons might not actually have ME/CFS)

 

[Amaya2014]

@duncan I share the same concern. I'm waiting to hear more about the 2day CPET and further testing/evaluation. I'm hypothesizing that if these tests are given early on or even required for enrollment then "improper" patients will end up being screened out.

Edited to add: The three step process of recommended patients from specialty clinics, executive committee of ME/CFS experts, and NIH committee final approval is going to make it even more difficult to stack the deck. (I said difficult, not impossible)

 

[waiting]

Half-jokingly, and for the sake of brevity, I refer to the 2 diametrically opposed approaches to the therapies CBT and GET as follows:

1. "Evil CBT" and "Evil GET":

- the BPS (PACE or NICE?) model in which the evil GET goal is to *cure* the ME patient with the end result that they can exercise according to national guidelines for HEALTHY people (obviously harmful & downright dangerous to ME patients).

- And the BPS model in which the evil GET goal is to convince you that you are not really sick (obviously harmful to ME patients, not to mention unforgivably deceptive).

Both are highly unethical & based on the incorrect assumption that we do not have a physical disease. Ridiculous.

2. "Potentially helpful CBT & Activity Management which MAY include safe, customized, monitored GET that respects PEM".

- CBT that any DR might recommend to a patient with any severe, life-altering chronic disease without a known treatment or cure -- including cancer, MS, ALS, ME. It's a coping mechanism, not a
disease-altering treatment & most definitely not a cure. And if the patient has cancer, for example, then CBT is an adjunct to radiation, surgery & chemo (along the same lines as eat well, get enough sleep, & drink plenty of water).

(Dr. Peter Rowe, at a conference a year ago, said that potentially helpful CBT can help even him -- eg. to help him realize that staying up late to watch the game will deprive him of needed sleep!). I'm paraphrasing what he said.

- GET - that I think @Sasha, you may be referring to, that some of our best clinicians selectively use with patients they have carefully evaluated. It includes suggestions like starting with UNDER 30 seconds of selected stretch & strength exercises - done while lying down, followed by rest, and only if it does not induce PEM. The "graduated" part is very slow increases, monitored by the therapist, and guided by the rule that the increase can NOT induce PEM.

For details on this kind of safe exercise, see the "safe exercise" papers available at

http://www.workwellfoundation.org/research-and-latest-news/

(Scroll down to Publications)

This is SAFE activity management, according to the severity of the ME patient's disease. It includes pacing to reduce PEM, wearing HR monitors to avoid PEM by staying under your HR @ AT.

These 2 approaches -- "potentially helpful" vs "evil" -- are opposite to each other in intent & result.

I guess there is a 3rd version of GET which is the regular, everyday approach to an exercise program for healthy people or people who are rehabilitating after a sprained ankle, or broken leg, etc. -- or perhaps even any other illness, EXCEPT ME (due to PEM).

Add: I guess you could simply call them BPS CBT and BPS GET -- but it's perhaps more clear to call them "evil".

 

[Amaya2014]

@waiting I see what you're saying. I think it's been too inflammatory and demeaning a history to continue with these acronyms in ME/CFS. Not if fences are to be mended. When PACE dies, or even if they wiggle out of this somehow, CBT and GET needs to go. I think it would be complicated trying to discern if a doctor is still being dismissive.

CBT is designed to alter thoughts that negatively affect behavior. Recommendations for this kind of therapy is inappropriate for ME/CFS. It's one thing for a doctor to say I want to refer you to a counselor because dealing with a chronic illness can be very difficult and some people find supportive therapy helpful as opposed to CBT can help you overcome whatever is going on in your mind to make you act this way.

The dialogue for GET is essentially the same. Start off with helping me to understand that my body is now reacting to physical and other types of exertion differently and strenuous physical activity is not recommended. Then maybe there can be dialogue on ways to maintain some degree of physical health, even if it's just advice like minimal stretching or walking if I can tolerate.

 

[duncan]

So what are the odds of somehow getting non-pwME placed into the NIH study?

I fear they are pretty good.

I think most of us would agree we do not want clinicians who would recommend any form of GET to patients. Why? Because it may suggest a fundamental misunderstanding of what constitutes PEM. But if my info is correct, maybe half of those clinicians selected to populate the study do just that. That's step one in the screening process.

Step two is Lipkin and Unger. I have reservations about Unger. Lipkin is not a clinician.

Step three is the three psych riders of the apocalypse.

Getting this crew to provide an authentic population of pwME looks pretty sketchy using my math. With a sample size of only 40, how many non-ME/CFS patients would it take to corrupt the results?

Not many.

 

[waiting]

@waiting I see what you're saying. I think it's been too inflammatory and demeaning a history to continue with these acronyms in ME/CFS. Not if fences are to be mended. When PACE dies, or even if they wiggle out of this somehow, CBT and GET needs to go. I think it would be complicated trying to discern if a doctor is still being dismissive.

CBT is designed to alter thoughts that negatively affect behavior. Recommendations for this kind of therapy is inappropriate for ME/CFS. It's one thing for a doctor to say I want to refer you to a counselor because dealing with a chronic illness can be very difficult and some people find supportive therapy helpful as opposed to CBT can help you overcome whatever is going on in your mind to make you act this way.

The dialogue for GET is essentially the same. Start off with helping me to understand that my body is now reacting to physical and other types of exertion differently and strenuous physical activity is not recommended. Then maybe there can be dialogue on ways to maintain some degree of physical health, even if it's just advice like minimal stretching or walking if I can tolerate.

Yes, but the problem is that CBT and GET are not acronyms specific to ME/CFS. I believe they existed long before and were unrelated to ME/CFS in particular. Unfortunately, I agree the definitions of these terms have been co-opted & corrupted by the BPS school when they are applied to ME/CFS.

 

[Amaya2014]

@waiting what you say is true but they were (in my opinion) erroneously prescribed to ME/CFS. If PACE is dismantled then there is no further argument for them. Still, if NIH and others are really listening then the majority are saying no to CBT/GET therapy.

@duncan I don't follow your reasoning. If CFS specialists have spent a good amount of their life and career daring to go where others wouldn't, why would any of them want to dismantle the opportunity to finally be accredited with groundbreaking recognition? I'm extending them the credit that they operate with sincerity and true understanding of this illness. I'll even go so far as to say, I personally don't think the minimal "exercise" that is prescribed to those who can handle it counts as exercise or anything close to GET. As you know, some people here want to incorporate some sort of exercise in their life. Maybe they have a less severe ME/CFS or don't have it at all...who knows right now? But, the study cohort are supposed to be defined by PEM.

 

[duncan]

@Amaya2014 , I cannot speak to their reasoning or intent.

But I do not see how there can be a doctor who understands PEM , its import, and its potential triggers, and have that same doctor recommending open-ended exercise (even minimal, but with explicit instructions to keep doing more) - without specifying that once a threshold is established, the patient should not exceed that.

The contradiction is too severe.

It seems to me either they are not understanding PEM, or they are ignoring it. Either way, I don't think such a clinician should be populating the NIH study. As I said earlier, if they are not recognizing PEM, or if they are confusing it for something else, then that means they could be sending someone down to Bethesda that does not have ME/CFS.