Tuesday 2/22 - What are NIH staff being taught about ME/CFS?

[Hope123]

Find out by watching Dr. Fred Gill's TUESDAY 2/22 4 PM Eastern Standard Time talk on ME/CFS (Chronic Fatigue Syndrome: Is there a virus?)
as a part of the NIH series 'Demystifying Medicine' which is

"Primarily directed toward Ph.D. students, fellows, and staff, it is also of interest to medical students and clinicians."

The US National Institutes of Health not only provide the majority of money for medical research in the US (financed by your tax dollars), they also train the nations' most promising future researchers.

Dr. Gill lists the CDC Toolkit, a 2004 article by Stephen Strauss, CFIDS.org website, the Fukuda 1994 criteria, and the Reeves 2003 empiric definition articles as resources for the audience. By the looks of the slides, there is nothing related to the many biological studies done within the last 20 years. If this is what is being taught to NIH staff, it is no wonder no one is interested in researching ME/CFS. The NIH is supposed to be cutting-edge, not repeating the same information over and over again.

Slides: http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Gill.htm

To watch live tomorrow or later when the video is archived:

Lectures are presented live via online streaming video, and recorded videos are available for viewing online within a few days after the live event. Both the live sessions and the recorded sessions can be found on the NIH Videocasting Web site. The lectures can be viewed online as streaming video using "Real Player," which is available as a free download from the Videocasting Web site.

NIH videocast site: http://videocast.nih.gov/

(If you miss the live event, click on "Past Events" and look for it in the archive.)

[Drs. Lo and Alter are also presenting but their talks are primarily about XMRV and their findings and less so about ME/CFS in general.]

 

[justinreilly]

His presentation is gross. just a rehashing of straus' anti-science propaganda. maybe he knew straus. i wrote him an email asking him to read the ccc and use it in his presentation.

 

[Dolphin]

Thanks for this, Hope123.

Looking at the slides, I'm not happy at all.

Looking at Slide 44, especially when looking at slides 37 on, there is little doubt its the sort of stereotype that is put out by those who promote GET and CBT based on GET. There are other alternatives to GET and CBT based on GET than the rest cure. And most people don't even have the option of complete rest. Leonard Jason has shown that the energy envelope has got good results.

Also Lenny Jason published this NIH-funded study (attached and below). The CBT arm was overseen by Vincent Deary from King's College London who had been involved in "successful" CBT trials including the PACE trial. The intervention that involved pacing came out better than CBT. They used a variety of outcome measures.

Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J., Reynolds, N., Brown, M. Weitner, BB., Rademaker, A and Papernik, M. Non-pharmacologic interventions for CFS: a randomized trial. Journal of Clinical Psychology in Medical Settings, 2007, 14, 4, 275-296.


Abstract Non-pharmacological behavioral treatments for
CFS have been suggested as promising. These trials have
tested protocols composed of behavioral, cognitive and
cognitivebehavioral interventions but there have been few
efforts to differentially evaluate their outcomes. The primary
purpose of the current study was to evaluate the
effectiveness of nurse delivered non-pharmacologic interventions.
In the present study, 114 participants diagnosed
with CFS were randomly assigned to four 6-month interventions.
The interventions were: cognitivebehavior
therapy, cognitive therapy, anaerobic activity, and a
relaxation control group. The study found that these
interventions led to increases in several areas of functioning,
with more consistent changes occurring among those
participants in the cognitive condition. For the 25 variables
in this study, significant change occurred for 28%, 20%,
16%, and 12% of the variables for the cognitive, cognitive
behavior therapy, anaerobic activity, and relaxation conditions,
respectively. However, the majority of participants
continued to be diagnosed with CFS following the treatment
trial. Implications of these findings are discussed.

Here's an extract:

For the 25 variables examined in this study, when one treatment condition evidenced significant positive change over at least one other condition, seven of these occurrences were for the COG condition, five for the CBT condition, four for the ACT condition, and three for the RELAX condition.... When examining clinical significance on the Physical Functioning subscale, somewhat similar findings occurred, with 30.4%, 18.2%, 11.1%, and 21.7% of individuals for the COG, CBT, ACT, and RELAX improving. It should be mentioned that the changes in the present trial were relatively modest and few participants experienced remission of illness. At the follow-up, there were no significant changes across conditions in the number of participants who were no longer classified as having CFS. These results are consistent with conclusions from other investigators, particularly those that have collected longer term follow-up data....

While all of the treatments were found to be of modest benefit for individuals with CFS, the COG condition exhibited the most beneficial changes for depression and pain in joints, when compared to the other three treatment conditions... In addition, this condition had more favorable change when compared to at least one other condition for the following outcomes: physical functioning, pain severity, sore throats, muscle pain, pain in joints, impaired memory, and post-exertional malaise (although for pain severity and impaired memory, these findings were due to comparing the COG to the RELAX condition which evidenced worsening over time).

There were several important differences between the CBT and COG therapies in that the COG intervention placed more emphasis on pacing of activities when compared to the CBT treatment. Indeed in the COG therapy, individuals were not instructed to engage in regular amounts of activity, and were not encouraged to engage in regular or sustained physical activity. It is possible that pacing of activity, which puts a strong emphasis on becoming aware of total available energy, managing energy, and not going beyond ones energy limits, may lead to the higher improvements seen in the post-exertional malaise and, ultimately, to better overall physical functioning... It is also of interest that the largest gains in self-efficacy occurred for the RELAX condition, particularly when compared to the ACT condition. The RELAX group also had the greatest reductions in muscle pain than any of the other conditions. Regarding headaches, both the RELAX group and the ACT group had more significant overall positive change in headache severity compared to the CBT condition... It is a bit unclear why RELAX would have been effective for the muscle pain and headache symptoms but not in other areas where pain is felt... Data from employment status and satisfaction were generally similar to the findings above. There were few significant differences for employment or the participant and clinician ratings among the four conditions at the 12-month follow-up. In general, participants in all four conditions were generally satisfied with the non-pharmacologic treatments and found them to be useful (with ratings in the 7090%). While participants seemed to have been satisfied with the treatments and found them to be useful, individuals were less likely to indicate that these treatments made them feel better; and clinician ratings of improvements were also generally lower than the treatment satisfaction ratings... the results suggest that these different treatment techniques may have modest, differential effects on the symptoms of CFS and individualizing a persons treatment might make sense.

Dr. Gill lists the CDC Toolkit, a 2004 article by Stephen Strauss, CFIDS.org website, the Fukuda 1994 criteria, and the Reeves 2003 empiric definition articles as resources for the audience.

I don't mean to be pedantic but it's easy to get confused on this. It's the Reeves 2005 empiric definition.

Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19. Free full text: http://www.biomedcentral.com/1741-7015/3/19

This is important because there is also a Reeves 2003 paper on the defintion:

Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER; International Chronic Fatigue Syndrome Study Group.
Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res. 2003 Dec 31;3(1):25. Review. Free full text: http://www.biomedcentral.com/1472-6963/3/25

The 2003 paper is a pretty bland paper. They make some small updates to the Fukuda et al (1994) criteria. It's the CDC international CFS study 2000-2003 mentioned in the slides.

It mentioned some questionnaires could be used. The 2005 paper is where the CDC takes this and does very odd things to it - uses the questionnaires in very odd ways.

Also, the 2003 paper made these recommendations regarding psychiatric exclusions:

Permanent psychiatric exclusions include lifetime diagnoses of bipolar affective disorders, schizophrenia of any subtype, delusional disorders of any subtype, dementias of any subtype, organic brain disorders, and alcohol or substance abuse within 2 years before onset of the fatiguing illness. The 1994 case definition stated that any past or current diagnosis of major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulimia permanently excluded a subject from the classification of CFS. Because these illnesses may resolve with little or no likelihood of recurrence and only active disease or disease requiring prophylactic medication would contribute to confusion with evaluation of CFS symptoms, we now recommend that if these conditions have been resolved for more than 5 years before the onset of the current chronically fatiguing illness, they should not be considered exclusionary.

For some very odd (and suspicious!) reason the 2005 misrepresents this:

Following recommendations of the International CFS Study Group, only current MDDm was considered exclusionary for CFS

 

[Hope123]

Dolphin, the paper cited is from 2003, which is why I put 2003 in my post but we should watch the video to see how Gill refers to this information:

http://demystifyingmedicine.od.nih.gov/DM11/CourseMaterials11.html

Identification of Ambiguities in the 1994 Chronic Fatigue Syndrome Research Case Definition and Recommendations for Resolution. BMC Health Services Research 3: 25, 2003. Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER, and the International Chronic Fatigue Syndrome Study Group.

 

[Dolphin]

Dolphin, the paper cited is from 2003, which is why I put 2003 in my post but we should watch the video to see how Gill refers to this information:

http://demystifyingmedicine.od.nih.gov/DM11/CourseMaterials11.html

Identification of Ambiguities in the 1994 Chronic Fatigue Syndrome Research Case Definition and Recommendations for Resolution. BMC Health Services Research 3: 25, 2003. Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER, and the International Chronic Fatigue Syndrome Study Group.

Hi Hope123,

You said:

Reeves 2003 empiric definition

There is no 2003 empiric definition paper. That's what I tried to explain.
His slides cover both the Reeves et al. (2003) paper you mention above in this post but also slide 17 talks about a 2005 study.

However, I'm looking at that more closely, and what is possibly being referred to there is the Georgia study (which uses the 2005 empiric paper and I think started around 2005).

Anyway, no biggie, it's just I think a lot of people get confused between the Reeves et al. (2003) paper, which isn't particularly problematic and the Reeves et al. (2005) paper which is (problematic). I'm just trying to educate people out there on the issue.

Anyway, it'll be interesting to hear what he says - doesn't look good. Well done for highlighting it.

 

[Hope123]

I haven't seen the talk yet but it looks like Gill added some slides at the end about the UK PACE trial.

Gill is presenting this information to the US' most promising young researchers and clinicians. Without showing the biological abnormalities that have been documented with ME/CFS , no matter what is said in the talk, it sends the message of "Why worry about these folks? There's nothing wrong with them. All they need is exercise, antidepressants, a pat on the hand, "there, there, dear," and they'll get all better. " [cue REM's "Shiny Happy People" and MAD's Alfred Neumann]


It's my belief that if they discuss the abnormalities, researchers and clinicians would be more interested. And no, the abnormalities don't need to be entirely proven or consistent -- these folks are suppose to be able the handle the controversial, the new, etc. and are supposed to be independent thinkers, not "sheeple." However, the XMRV situation turns out, we want them to know of the other findings -- who knows if there's some brilliant scientist in the crowd who will hear an idea, have a lightbulb go off in his/her head, and ultimately help find the solution to this illness?

Send your comments/ questions to Dr. Gill and cc Dr. Francis Collins, the director of NIH.

Dr. Gill: http://www.cc.nih.gov/about/SeniorStaff/fred_gill.html (fgill@nih.gov)
Dr. Francis Collins: francis.collins@nih.gov