Discussion in 'General ME/CFS News' started by Keela Too, Sep 27, 2018.
Well done @JoanNI for setting this up.
Wow! Well done!
I understand there will be a video on the site afterwards. It may only be broadcasting to Belfast area now. Watch this space.
Thank you, I was about to ask about a video. Dr Montoya is doing a lot for us.
It’s just finished now. Sobering - but also optimistic about the way forward. Good programme.
from their website (tweet from Joan)
You can watch the programme on the vimeo at -
Great video, thank you for the link, @Eagles!
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)
also now available through NVTV site
eta: just seen it goes to same video as posted above
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?
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?
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.
What a great video. Wow.
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:
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.
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)".
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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