Hear More on Tuesday about NIH study during CDC’s Grand Rounds

[joshualevy]

I was pleased to hear Dr Nath talking approvingly of dealing with ACT UP during the 80s and looking forward to working with the Patient Advisory Group

I doubt this will help much. In the 1980s, ACT-UP and the CDC/NIH were very much on the same side. They both wanted more science on AIDS and more scientifically based public health decisions. They were allies against conservative political forces, who did not really care about science, and wanted moralistic public health decisions. The CDC/NIH was the intellectual part, while ACT-UP was the grass roots part, but they were the same side.

That is a completely different situation than now, when patient advocates and CDC/NIH are not allies (and political forces are generally not involved at all).

Also, I think that ACT-UP had little impact on the basic science of AIDS. Its impact was on the politics of AIDS after the science was settled. Look at the timeline:
1981 - AIDS first described (although not called that).
1982 - Transmission is understood.
1983 - Viral cause is discovered.
1983 - Successful results from first antiviral drugs.
1987 - ACT-UP Organized

Bottom line: the basic science was done before ACT-UP was organized. ACT-UP helped that science get applied to public policy, and was very important for that reason, but had little to do with the basic science. ME/CFS is still in the "basic science" phase, and it's not clear to me that an ACT-UP like group would have much effect, since the science is so unsettled in the scientific community. The thing about ACT-UP was that by 1987, the scientific community was united in its AIDS thinking. It was the political community that was heading in a non-scientific direction, and ACT-UP helped turn that around. But ME/CFS is still trying to get scientific consensus.

 

[sarah darwins]

Dr. Lapp made some very important points but highlighted to much CBT, Get, Pain and Sleep Meds which are just band aids for the neuro immune dysfunction that he is well aware of. He uses ampligen!!!!!

He does? That's weird. You certainly wouldn't have suspected that listening to him here (well, I didn't). Hm. Makes you wonder how much political accommodation and compromise are going on there.

 

[Justin30]

He does? That's weird. You certainly wouldn't have suspected that listening to him here (well, I didn't). Hm. Makes you wonder how much political accommodation and compromise are going on there.

He did mention some points with regard to severity and disability and he described the 37 yr old patient of his. He talked way too much about what is offered to everyone. I agree politics had a huge part to play and he might be in someones pocket. The guy uses ampligen. He knows how sick we get.

Dr Lapp i think was a poor choice.

I wish they had peterson or klimas speak.

 

[sarah darwins]

I agree politics had a huge part to play and he might be in someones pocket.

Well, I wouldn't want to suggest that without a basis, but I was thinking more that it may be a bit like the NICE guidelines in the UK, where apparently people who disagreed with the psychosocial crowd swallowed their objections in order to get funding through. Probably a mistake, since it allowed that lot to become as dominant as they are, but it's the way this public sector stuff often works.

 

[sarah darwins]

I wish they had peterson or klimas speak.

Yeah, wouldn't that be nice.

 

[Valentijn]

Many surveys/screens for mental illness have questions that if answered honestly by someone w/ a chronic illness would come out as pos for MI.

The SF36, for which the results were shown on the slide, is actually pretty good. Which is why we tend to have very normal scores on it, versus the HADS which Dr. Lapp mentioned, where physical limitations are equated with depression.

He does? That's weird. You certainly wouldn't have suspected that listening to him here (well, I didn't). Hm. Makes you wonder how much political accommodation and compromise are going on there.

It sounded like he was reading from a script. Presumably his own.

 

[medfeb]

Dr. Lapp made some very important points but highlighted to much CBT, Get, Pain and Sleep Meds which are just band aids for the neuro immune dysfunction that he is well aware of.

Can i ask what you saw as important points in Lapp's presentation? Not being sarcastic, i'd really like to know.

 

[A.B.]

Dr Lapp seemed excessively optimistic. Yes, some patients get better over time. Others get worse. He didn't mention that. Some exercise, within limits, can prevent getting out of shape or limit deconditioning but that's true for all chronic diseases. He emphasized exercise too much as if it had a special role. He didn't talk about severe cases.

 

[Sidereal]

It fascinates me how some people find it difficult to accept results.

How can anyone try to avoid seeming like they are mentally ill.

This is only possible if they

a) are mentally ill and b) smart enough to know how to outwit a mental health examination and c) able to conceal their mental illness

Maybe they were just not mentally ill ?

The SF-36 isn't a mental status exam, though. It's a self-report questionnaire that takes the patient's answers at face value. So it is totally possible to fake a score on it. I'm not saying people are, just that it's totally open to self-report bias.

 

[Justin30]

The NICE Guidlines are load of crap. We have them here in Canada too.

Our Dr are starting to see the need for large scale change. They were given funding to do more research and hopefully going to start a Rutuximab study in the near future.

 

[Kati]

The NICE Guidlines are load of crap. We have them here in Canada too.

Our Dr are starting to see the need for large scale change. They were given funding to do more research and hopefully going to start a Rutuximab study in the near future.

Which dr are you talking about, @Justin30 ?

 

[ScottTriGuy]

The NICE Guidlines are load of crap. We have them here in Canada too.

Our Dr are starting to see the need for large scale change. They were given funding to do more research and hopefully going to start a Rutuximab study in the near future.

Wow - that be wonderful (and extremely surprising) - do you have a reference?

 

[Snowdrop]

I'd sure like to know who in Canada is being given funding for Rituximab study. Would want to follow this.

 

[SB_1108]

ME/CFS is still in the "basic science" phase, and it's not clear to me that an ACT-UP like group would have much effect, since the science is so unsettled in the scientific community.

I don't think we should wait for everyone to become best friends before we organize an ME/CFS direct action patient advocacy group. Its important for us to start as soon as possible - the patients have already been suffering for too long.

 

[Yogi]

He does? That's weird. You certainly wouldn't have suspected that listening to him here (well, I didn't). Hm. Makes you wonder how much political accommodation and compromise are going on there.

I was surprised at that. He founded Hunter Hopkins centre. He sounded like an imposter.

http://drlapp.com/more-hhc/story-of-hunter-hopkins/

 

[Justin30]

Can i ask what you saw as important points in Lapp's presentation? Not being sarcastic, i'd really like to know.

The sheer fact that aknowledged PEM in a patient and the degree of disability she had. He also touched on all the disabling features of the disease. Ie. Sleep, pem, weakness, loss of the ability to do basic tasks, etc. Would you like me to name more? The fact is he didnt say she came into my practice was really deppressed lazy, forced her husband to do all the work, wanted to sleep all the time and when I handed her this questionaire it showed that she was depressed and had a psychological disorder.

Dont get me wrong I dont think he was the person to be up there. Read the rest of my post and comments further down.

 

[medfeb]

The sheer fact that aknowledged PEM in a patient and the degree of disability she had. He also touched on all the disabling features of the disease. Ie. Sleep, pem, weakness, loss of the ability to do basic tasks, etc. Would you like me to name more? The fact is he didnt say she came into my practice was really deppressed lazy, forced her husband to do all the work, wanted to sleep all the time and when I handed her this questionaire it showed that she was depressed and had a psychological disorder.

Dont get me wrong I dont think he was the person to be up there. Read the rest of my post and comments further down.

Thanks. I appreciate the feedback. I understand your point when I think about some of the really awful material that's out there. Personally, I think the missed opportunities were around not high lightly the severely ill, not more fully conveying the nature of PEM and its impact on aerobic energy production, how that could be used diagnostically and its implications for treatment, the idea of the energy envelope, etc.

 

[dancer]

And during the Q&A, when someone asked about whether these patients should see a specialist or be cared for in primary care, which doctor was it (I thought it was Dr. Lapp?) who said, "yes, they can be managed by their primary care doctor."? I thought that was another missed opportunity to point out the various specialists that might be helpful. I realize that right now, no one specialty takes responsibility for ME/CFS patients - but eventually we need more than what a primary care doc can offer, and I expected/hoped to hear more about that.

 

[Justin30]

Thanks. I appreciate the feedback. I understand your point when I think about some of the really awful material that's out there. Personally, I think the missed opportunities were around not high lightly the severely ill, not more fully conveying the nature of PEM and its impact on aerobic energy production, how that could be used diagnostically and its implications for treatment, the idea of the energy envelope, etc.

Much agreed he at least aknowledged it. I am severely ill ATM and would not spend a penny to see Dr Lapp. But least we are getting aknowledgement.

Anthony Kamoroff was the person to make all important points like I will call this disease "ME/CFS" not just CFS. He said what needed to be said.

I think that this topic could be beaten to death for weeks/months/years.

Dr. Lapps presetation was poor? Yes and a possible missed oppotunity..For sure..read my post

Dr. Kamoroff presentation was good? Yes

OMF Should be getting help from NIH and CDC. Now that they have aknowledged that it is a serious health concern. We should see more money for the severely afflicted OMF Study this is our best bet with allstar Drs and Nobel Lareauts.

I love PR and all the feedback and debate but is there a way PR could help us or organize more advocacy through the forum so we spend time pushing hard from our houses and beds?

I think it was SASHA that had the sign the petition thing at the bottom of signature. I missed it and would have loved to sign it.

If advocacy or petition stuff comes up, could we put and advertise it on all Forum sections so no one forgets. My Brain Fog and other symptom make me forget a ton of stuff. Just a thought.

 

[ScottTriGuy]

is there a way PR could help us or organize more advocacy

Hey @Justin30

Are you aware of this site specifically established to facilitate community-led advocacy for ME patients...

http://www.meaction.net/