TONIGHT! Screening of Dr Montoya interview in N.Ireland by NVTV

Sounds like a further update is being planned for the CDC website.

Jose Monotya mentions that two weeks ago he was invited by the CDC and asked, along with a group of other physicians, to advise them on educational material that will go out to physicians across the US.

(around the 22:50 mark)
 
From a very bad memory, I think Dr. Montoya said there will be some condensed information coming very shortly for educating medical professionals. He also told me (kindly) I put too much info in our medical professional packs, he’s right of course! That’s why I am grateful to be able to include S4ME PACE doc in all packs now.
With the history, politics and breakthroughs on this disease, how on earth do we condense an entire info pack to one A4 as he advised me?
 
JoanNI said:
With the history, politics and breakthroughs on this disease, how on earth do we condense an entire info pack to one A4 as he advised me?
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You don't, which I think is Dr. Montoya's point. The A4 sheet's primary aim should be to motivate people to explore further. If you try to teach someone an entire course on their first day, you might push vast amounts of information at them, but none of it will be received. I think the challenge for your A4 sheet is not what to put in, but what to take out. If it's not going to motivate further effort then leave it out I would think. There's no room for anything else.

Maybe the A4 sheet provides an easy access link for obtaining the pack?
 
brf said:
Sounds like a further update is being planned for the CDC website.

Jose Monotya mentions that two weeks ago he was invited by the CDC and asked, along with a group of other physicians, to advise them on educational material that will go out to physicians across the US.

(around the 22:50 mark)
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The CDC has stated in the past that their ME/CFS physician education materials (for Continuing Medical Education credit) would be available sometime in Fall, 2018.

Given that the CDC's ME/CFS "Information for Healthcare Providers" was 6 months late, I am skeptical about the timeline. However, that would be amazing if the training materials became available this year.
 
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I'm noticing some disagreement between Montoya and the CDC on exercise. Both say there are opportunities for some ME/CFS patients to increase exercise capacity.

Montoya: ME/CFS patients in a recovery phase can increase exercise.
CDC: ME/CFS patients who "listen to their bodies" and have had their orthostatic intolerance treated can increase exercise.

Montoya repeatedly mentions that doctors should not prescribe exercise for ME/CFS patients, except during the "recovery phase".

Here's what the CDC says:
CDC said:
However, it is important that patients with ME/CFS maintain activities that they can tolerate, since deconditioning is also harmful to patients. For some patients, it might be first necessary to treat orthostatic intolerance and improve patients’ capacities to tolerate being upright before any activity can be considered for careful implementation.

Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning. Some healthcare providers with expertise in ME/CFS refer their patients to an exercise physiologist who understands ME/CFS and uses an individualized and flexible approach to advancing activity levels. If exercise plans are not designed and executed carefully, patients may experience setbacks and serious deterioration in function and health.

Expectations need to be managed, as exercise cannot be expected to be a cure. However, improved function is a long-term goal of managing ME/CFS; tolerance of aerobic exercise and normal levels of activity is also a long-term goal that can be related to improved function, but should be pursued cautiously as described above.

https://www.cdc.gov/me-cfs/healthca...-mecfs/treating-most-disruptive-symptoms.html
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Thoughts on increasing exercise in ME/CFS? Is this just disguised GET, or do some patients actually have the ability to increase exercise capacity without worsening symptoms?
 
I've just watched the video. Very moving to hear him repeatedly saying how badly pwME have been treated by being misunderstood, rejected etc.

He was very clear that pwME should not be told to exercise.

He talked about some of his patients reaching a near recovery stage with long term antivirals if they have herpes infection, and anti inflammatories etc. Only at that stage when they are clearly in recovery can they start to exercise. I think he was clear that exercise is never part of the treatment. It's something patients who recover find they can start doing.
 
I don't know, I would question the need to tell people they should exercise, regardless of their 'phase' as, at least in my experience, people will do so naturally, at least until they reach a level where they can physically manage everything they wish to do as a matter of course.

Below that level, IMO PwME should not be wasting energy on prescribed exercise, and that's where AFAIK most PwME are, or why would they be under the impression they 'still' have ME

If that makes sense.
 
Trish said:
I've just watched the video. Very moving to hear him repeatedly saying how badly pwME have been treated by being misunderstood, rejected etc.

He was very clear that pwME should not be told to exercise.

He talked about some of his patients reaching a near recovery stage with long term antivirals if they have herpes infection, and anti inflammatories etc. Only at that stage when they are clearly in recovery can they start to exercise. I think he was clear that exercise is never part of the treatment. It's something patients who recover find they can start doing.
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Yes, that is my impression. Though how to define "recovery" seems to be an ongoing issue for us. ;)

Montoya and the CDC seem to be at odds with each other. I wonder if the new CDC educational materials will more closely resemble the CDC's current position of always prescribing some exercise or Montoya's "never prescribe exercise (except during recovery)".
 
Wonko said:
I don't know, I would question the need to tell people they should exercise, regardless of their 'phase' as, at least in my experience, people will do so naturally, at least until they reach a level where they can physically manage everything they wish to do as a matter of course.

Below that level, IMO PwME should not be wasting energy on prescribed exercise, and that's where AFAIK most PwME are, or why would they be under the impression they 'still' have ME

If that makes sense.
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Just watched the video, and that's not how I heard it. I believe Dr. Montoya is saying that IF someone [is lucky enough to be one of the few who] recovers from ME, then, and only then, should they begin to think about exercising again. Otherwise if the disease is ongoing [as it is for the great majority] then PwME should not even think about trying to exercise. [square bracketed text] is what I believe Dr. Montoya took as implicit in what he was saying.

So Dr. Montoya is very clearly saying that PwME should only ever exercise if they are lucky enough to get better, in contrast to the BPS folk who insist PwME must exercise in order to get better.

Not only is Dr. Montoya a great scientist, but he also seems a wonderful person, and by the look of it a committed advocate. And I believe he called you an Angel @JoanNI :).
 
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