Ryan Prior's quick notes on CDC Grand Rounds

[Merry]

Ryan attended the CDC Grand Rounds presentation on ME/CFS yesterday. He spoke to some presenters and audience members, including patients and CDC staffers, and handed out dvds of Forgotten Plague.

--My previous ME/CFS event with CDC had dismal attendance and had lifted up some of the older bad research that had been conducted in previous decades. I had left depressed. Today was much different. Grand Rounds attracted a crowd. There was a sense that real science is going on, and I left with positive feelings.

--Dr. Nath, the newcomer to the field, seems a man of integrity and industrial-strength intellect. His comments about listening to patients instead of textbooks were well-received. Listening to patients is an idea championed by renowned scholar William Osler in the 19th century, and which is gaining more credence again in the 21st century. He seems particularly open to hearing from patients and said he'd be happy to have me at NIH to show what they're doing.

https://www.facebook.com/CFSDocumentary/?fref=nf

 

[Cort]

Cool....

Did anyone who saw Dr. Lapp's presentation have any comments on it. Some people are upset about it. I haven't seen it yet.

Ryan attended the CDC Grand Rounds presentation on ME/CFS yesterday. He spoke to some presenters and audience members, including patients and CDC staffers, and handed out dvds of Forgotten Plague.

https://www.facebook.com/CFSDocumentary/?fref=nf

 

[Seanko]

Cool....

Did anyone who saw Dr. Lapp's presentation have any comments on it. Some people are upset about it. I haven't seen it yet.

CDC_eHealth tweeted below...guessing the word "psychosocial" is the point of discussion

Lapp: Diagnosis of CFS involves review of medical and psychosocial histories, physical exam and mental health assessment. #CDCGrandRounds
— CDC_eHealth (@CDC_eHealth) February 16, 2016​

 

[Merry]

Cool....

Did anyone who saw Dr. Lapp's presentation have any comments on it. Some people are upset about it. I haven't seen it yet.

Although I can't say for sure what others were upset about, I cringed at his emphasis on exercise. For a short time I was a patient of Dr. Lapp's so I was already aware of his insistence on exercise in the treatment plan. In his talk, he did say that patients may only be able to tolerate five minutes of exercise a day but that they can build from that.

 

[Strike me lucky]

Although I can't say for sure what others were upset about, I cringed at his emphasis on exercise. For a short time I was a patient of Dr. Lapp's so I was already aware of his insistence on exercise in the treatment plan. In his talk, he did say that patients may only be able to tolerate five minutes of exercise a day but that they can build from that.

I think if ones homebound theres some merit to exercise if its tailored to an individual cfser. I think the comorbidities cfsers have can be from sedentary life style which is increased risk of heart disease, osteoporosis etc etc. Its really individual and if one is feeling sick below their base line yhen know or if one is almost bed bound no. I guess if one could afford and tolerate it regular massage may help. Its always a tricky and touchy subject.

 

[Merry]

So what did you think of the Grand Rounds and, in particular, Dr. Lapp's presentation, @Strike me lucky?

 

[weyland]

Cool....

Did anyone who saw Dr. Lapp's presentation have any comments on it. Some people are upset about it. I haven't seen it yet.

It was very heavily focused on fatigue and GET and several mentions of emotional stress being a factor. I can't say I enjoyed it.

 

[Strike me lucky]

So what did you think of the Grand Rounds and, in particular, Dr. Lapp's presentation, @Strike me lucky?

I havent seen his presentation yet so not sure of his opinions. I know klimas was doing work on activity and having people using heart rate monitors etc trying to exercise well under anaerobic threshold. No personal experience but sounds ok on paper.

 

[Strike me lucky]

I havent seen his presentation yet so not sure of his opinions. I know klimas was doing work on activity and having people using heart rate monitors etc trying to exercise well under anaerobic threshold. No personal experience but sounds ok on paper.

Not a cure but help avoid comorbidity issues and help keep functional.

 

[Lissa]

@Merry : I agree about Lapp's presentation. I felt a little unsettled as "exercise" as suggested sure seemed like the dreaded GET. Although I understand his clause about 5 minutes and working up (or down) if needed, I felt dismayed when "bicycling" was included on his list of activities.

I think most of us are nowhere NEAR being able to even get on a bike. Even with pacing and grading etc. (And one can only imagine the impending disaster / backslide if someone blindly follows doc's orders by trying to go for a bike ride! ???!!!???!).

Suffice it to say, this part seemed so far fetched as to make one wonder about the suggested methodology in general. Isn't the whole point with ME/CFS -- that exercise can be damaging? As in the IOM's suggestion of renaming it SEID? His recommendation seems to fly in the face of that reality...

Otherwise I think the whole Grand Rounds was very positive!

 

[weyland]

I agree about Lapp's presentation. I felt a little unsettled as "exercise" as suggested sure seemed like the dreaded GET. Although I understand his clause about 5 minutes and working up (or down) if needed, I felt dismayed when "bicycling" was included on his list of activities.

The fact that he thinks we are capable of aerobic exercise at all speaks volumes about either his understanding of the disease or his cohort, or both.

 

[Lissa]

EXACTLY!!!!

 

[IrisRV]

The fact that he thinks we are capable of aerobic exercise at all speaks volumes about either his understanding of the disease or his cohort, or both.

Let me start by saying I like the guy a lot. He was the first specialist I saw and I found him kind and supportive. I left his practice because I felt the treatments he was willing to give me were inadequate -- pain meds, sleep meds, and management strategies.

That might work for mild patients. It may relieve some of the suffering of moderate-severe patients who could not get pain and sleep meds otherwise, and who need to learn about pacing. It's not nearly enough for moderate-severe patients who want improvement on the full range of symptoms.

I think HH treats CF and FM patients as well as ME/CFS patients. Perhaps his patient cohorts self-select to be mild patients with primarily pain and generalized fatigue, that is, perhaps a large portion of his moderate-severe patients move on leaving those for whom his treatment is sufficient in his practice. If this is so, then as @weyland suggests, his patient cohort may be affecting his perception.

Dr Lapp is close with the CDC. He's their go-to guy for ME/CFS. I'm not suggesting he follows CDC's belief about the illness. I think he's trying to change it from the inside. Even so, his thinking is more palatable to the CDC than that of say, Lerner, Montoya, or Klimas.

If Dr Lapp is suggesting aerobic exercise, he's changed from when I saw him. He was very much into Workwell's work, did CPET testing before most other doctors did, and recommended pacing using a HR monitor. None of that seems consistent with recommending aerobic exercise.

I'm finding these reports on what he said (I haven't seen it myself yet) very disturbing. Telling doctors that GET and aerobic exercise is good for ME patients is dangerous. If he said what most people seem to agree he said, I'm disappointed in him.

 

[Who Me?]

 

[IrisRV]

Okay, I'm beyond disappointed. Sounds like he sees more psych issues and FM than moderate-severe ME. Sigh...

 

[Hezza]

I was very disappointed in his presentation. And even tho he qualifies (beginning at 5 mins, stopping if not tolerated) the only thing that will resonate w the average physician viewing this is, "these people need to get off their butts & exercise!" The rest of the presentation was promising....

 

[Seanko]

@Who Me? thanks for posting the video.
Dr Avi Nath's presentation was short & told us what needed to know. The Anthony Komaroff talk was a good reminder of the IoM report.

If you are going to watch it, fast forward to the 2nd half Dr Nath begins at about 45 minutes.

(Does anybody know who the woman is at the end asking all the questions?)

 

[Who Me?]

@Who Me? thanks for posting the video.
Dr Avi Nath's presentation was short & told us what needed to know. The Anthony Komaroff talk was a good reminder of the IoM report.

If you are going to watch it, fast forward to the 2nd half Dr Nath begins at about 45 minutes.

(Does anybody know who the woman is at the end asking all the questions?)

I think it was on Facebook on an ME group