ME/CFS Buzz (March 12th 2012)

March 12, 2012

Posted by Cort Johnson

RESEARCH GROUPS ON THE MARCH…..

CAA Spells Out Approach in Research Ist Webinar

I believe we are at the cusp of a revolution in how CFS is viewed, researched and treated. I don’t know it’s a year or 5 years but the future has never been brighter. Kim McCleary

With 471 people enrolled, participation in a core part of the CAA’s research effort, the Biobank has been good. Intriguing they’re not just enrollingt healthy controls and ME/CFS patients they’re also looking at family members (good for genetic studies) and people with other diseases. Given the high level of genetic risk suggested in the recent Albright study and similar levels in fibromyalgia studies, with a strong family component the CAA Biobank could end up being a center of genetic studies in ME/CFS.

The CAA is moving forward quickly with its part of the bigCASA project; an effort involving the CDC, NIH and CFS researcher to produce the infrastructure needed to support multi-center studies . The CAA’s implementation of that project – called the CASA4CFS – will be the first portion of CASA up.

The CAA’s approach to research – building an infrastructure (biobank/patient repository) and funding studies that go through peer review process – is strikingly similar to that of the Chronic Fatigue Initiative (CFI). According to Kim McCleary, with both projects containing some of the same subjects, the two projects complement each other quite well since they should able to quickly verify any results that turn up. (No more two and a half year waits for validation studies????)

TheCAA is committed to making the Biobank a world-wide resource for CFS research and it is VERY scalable. It’s eager to accept patients, family members, etc. Get your family members to join up – they’re a valuable resource. Call Gloria Smith at 704-362-2343 or send an email to biobank@cfids.org for more.

Chronic Fatigue Initiative (CFI) Progressing Well

CFI Director Scott Carlson recently provided the low down on the CFI’s progress. As you may remember the CFI was founded last year with a $10 million dollar three-year grant from Hutchins Family Foundation to research ME/CFS. They quickly began building their infrastructure (Biobank) and immediately funded two studies (the Lipkin pathogen study, Aschiero epidemiological study). So where are they now – just a couple of months later??

A Biobank at Duke University and a database at Vanderbilt University have been established and hold a significant number of the projected samples and data (200 CFS/200 healthy controls). Samples on their way to Dr. Lipkin for the biggest, most comprehensive pathogen ever in ME/CFS and peliminary results are expected later this year. Two weeks ago CFI clinicians (Drs. Peterson, Klimas, Bateman and Montoya) and research coordinators met to chart their next steps.

The CFI has recruited the Scientific Review Panel that will (a) produce hypothesis and (B) then request applications to study them. The word is that the Hutchins Family Foundation is willing to pump more money into the CFI if the projects work out. The CFI is laying the bricks for a more extensive effort in the future. It shouldn’t be long before we hear which areas they’re going to concentrate on in ME/CFS.

RESEARCH

Low levels of autoantibodies suggest CFS patients differ from people with other autoimmune disorders

Autoimmun Rev. 2012 Feb 23. Antinuclear antibody detection by automated multiplex immunoassay in untreated patients at the time of diagnosis.

Op De Beéck KVermeersch PVerschueren PWesthovens RMariën GBlockmans DBossuyt X.

Whether or not ME/CFS is an autoimmune disorder came into question after the successful Rituximab studies. This study looked for 13 autoantibodies in hundreds of patients with autoimmune disorders, 140 people with CFS and 134 controls with other disorders.

While high percentages (60-100%) of people with several autoimmune disorders tested positive for the presence of autoantibodies, only low percentages (7%) of people with CFS did. Because many other autoantibody tests exist this study does not rule out the possibility that CFS patients have high levels of autoantibodies but it does suggest that if CFS is an autoimmune disorder it differs in some ways from lupus, systemic sclerosis, Sjogren’s Syndrome and others.

Telephone Based CBT Trial in Adolescents Shows Results

Effectiveness of internet-based cognitive behavioural treatment for adolescents withchronic fatigue syndrome (FITNET): a randomised controlled trial.

Nijhof SLBleijenberg GUiterwaal CSKimpen JLvan de Putte EM.

The PACE trial in the UK stumbled and the results of the big FITNET trial in Belgium were not fine at all but now we have a smaller but still fairly robust CBT type trial that appears to have worked out pretty well.

This was an internet intensive approach with parent and therapist support in adolescents with CFS. The participants were encouraged to use 21 modules which included information on pacing, school, sleep, thought, my goals, possibilities, etc. The adolescents apparently used the online portion of the program extensively and that was cited as one possible reason why this study was more successful than others in the past.

As often occurs in these studies the improvements were overstated, in particular, the 63% recovery rates were clearly too good to be true. Even Dr .White, a strong CBT advocate stated that “that the researchers used ‘liberal criteria’ for recovery which “were not stringent and some individuals who entered the study were already attending school fairly frequently”.

Some Proviso’s of the study (see the Forum discussion and CAA analysis for more)

  • Low levels of infectious onset (28%) and high rates of gradual onset (56%) suggested the program was looking at an somewhat atypical population.
  • Recovery was partially determined by school attendance in last two weeks – too small a period of time.
  • Recovery rates were certainly significantly lower than reported (35%?)
  • Several physicians have reported that adolescents have higher recovery rates than adults; thus this study may not apply to adults
  • The Fukuda criteria used can bring a wide variety of patients
  • Very ill people were not part of the study

While recovery levels were overstated the significant decreases in self-reported fatigue severity, self-reported increased physical functioning and high rates of self-reported improvement relative to ‘usual care’ group (which, interestingly enough included CBT), however, suggested that this internet based system was helpful for many of these patients and was more effective than traditional CBT approaches.

The results from ‘CBT’ studies ( a notoriously vague term) are all over the map bringing into question what roles different approaches, different patient groups or different methodologies play. After years of study it seems clear that some people benefit to some degree and others don’t but determining who benefits and what parts of CBT (a multi-dimensional program) work for whom is unclear.

These studies are very complex. The discussion on the Phoenix Rising Forums http://forums.phoenixrising.me/showthread.php?16602-FITNET-Trial-Effectiveness-of-internet-based-CBT-for-CFS-an-RCT-(Nijhof-et-al-12) covers a lot of ground

With the NIH throwing over $2 million at two internet based studies (Antoni/Friedberg) , we’ll be seeing more of this CBT approach in the future. The Friedberg trial is currently recruiting adult patients.

Coffin and Ruscetti Agree on Something? Coffin/Ruscetti Study Finds Contamination in XMRV Samples

PLoS One. 2012;7(2):e30889. Multiple Sources of Contamination in Samples from Patients Reported to Have XMRV Infection. Kearney MFSpindler JWiegand AShao WAnderson EMMaldarelli FRuscetti FWMellors JWHughes SHLe Grice SFCoffin JM.

This small study is from what we could term the NCI XMRV ‘team’; all the biggies at the National Cancer Institute (Coffin, LeGrice, Malarelli) including, interestingly enough, Dr. Ruscetti were involved. This is the first negative study Dr. Ruscetti has been involved in. This study determined that all the ‘XMRV’ found in the samples from several participants from the original Science paper or from healthy controls was from endogenous (inactive) murine leukemia retroviruses (MLV’s) for from cross-contamination from laboratory produced XMRV.

Add Another Cause (and a Name) to the List:”Cervical Neuro-muscular Syndrome”

Neurol Med Chir (Tokyo).2012;52(2):75-80. Cervical neuro-muscular syndrome: discovery of a new disease group caused by abnormalities in the cervical muscles.Matsui TIi KHojo SSano K.

We propose that treatment of the cervical muscle is effective for general malaise.

During a whiplash study this Japanese group realized that problems in the neck muscles can result in autonomic dysfunction, headache, vertigo, dizziness and chronic fatigue syndrome. They stated that patients treated for 2 years had ‘good outcomes’ but did not mention what the treatment was in the abstract.

The neck area has gotten interest of late. Dr. Patrick Wood is now convinced that upper spinal cord problems play a significant role in some fibromyalgia patients, Dr. Perrin is convinced the neck plays a role in ME/CFS and neck/blood vessel issues are being studied with vigor in multiple sclerosis as well.

http://www.ncbi.nlm.nih.gov/pubmed/22362287

FM/’Chronic Fatigue’ Patients attempt to retrain their Amygdala’s

Explore (NY). 2012 Mar;8(2):92-8. A mind-body technique for symptoms related to fibromyalgia and chronic fatigue. Toussaint LLWhipple MOAbboud LLVincent AWahner-Roedler DL.
Ashok Gupta, a recovered CFS patient, believes over-activation of the fear center of the brain, the amygdala, causes the neuroendocrine and immune exhaustion in CFS. Every time the body tilts a bit from homeostasis (through standing, exercise, stress) he believes the amygdala mistakenly jumps into action ramping up the fear levels and swamping the bodies stress and immune systems. In this scenario every body sensation is a potential disaster and one could see how Gupta’s scenario could eventually lead to immobilization.

In his DVD course Gupta uses mind– body techniques that promote relaxation and reduce the attention to body sensation or catastrophic thoughts (a normal outcome of the amygdalar activation) allowing the amygdala to calm down and giving the body/mind the rest it needs to hopefully recover.

Many people have tried the Amygdala Retraining Program and some have done quite well – but anecdotes mean little in the world of science. It was time for the rubber to meet the road with the AR.

This small study (14 patients) compared the amygdala retraining program with CBT/GET in FM patients and found that amygdala retraining came out on top with the patients experiencing significant gains in several areas (SF-36 –physical, SF-36 – energy, SF-36 –pain, MYMOP–2, MDFI–motivation, MDFI–activity, and FIQ) which were unaffected by CBT/GET.

Dropout rates were fairly high, though, possibly because the AR is a more challenging program. Of the 57 people who started the study only 21 completed it and of those, only 7 finished the AR arm. It was also difficult to get people into the study; of the 183 patients questioned, 2/3rds declined to participate.

The study was ultimately too small to give other than preliminary results. Yes, it did seem to be effective in reducing some symptoms and increasing energy levels in those who stuck with it but a significant number did not. An AR study in CFS completed earlier this year.
Pasted from <http://www.ncbi.nlm.nih.gov/pubmed/22385563>

Lyrica Wins out In Mexican Fibromyalgia Competition

Reumatol Clin. 2012 Feb 29. Cost-effectiveness analysis of pharmacologic treatment of fibromyalgia in Mexico. Arreola Ornelas HRosado Buzzo AGarcía LDorantes Aguilar JContreras Hernández IMould Quevedo JF.
The results are just in….Lyrica edged Neurontin by nose in the Mexican Fibromyalgia Pharmaceutical Sweepstakes (:)) This Mexican study found that among pharmaceutical drugs Lyrica (pregbalin)(44.8%), then neurontin ( gabapentin (38.1%) and cymbalta (duloxetine) (34.2%) controlled pain the best. Since Lyrica and Neurontin are anti-convulsants it appears these types of drugs work best. Cymbalta is an ‘anti-depressant’ which also happens to work in patients with pain (and no depression).

<http://www.ncbi.nlm.nih.gov/pubmed/22386298>

Huh? Poor Sleep Does Not Contribute Much to Pain in Fibromyalgia?

J Pain. 2012 Feb 29. [Epub ahead of print] Predictors of Clinical Pain in Fibromyalgia: Examining the Role of Sleep. Anderson RJ, McCrae CSStaud RBerry RBRobinson ME.

Fibromyalgiapatients may benefit from a 3-pronged approach to pain management: reducing pain’s spatial extent, normalization of central nervous system hypersensitivity, and psychobehavioral therapies for negative mood.

We have long heard that poor sleep tends to sensitize the nervous system resulting increased pain not just in FM patients but in healthy people as well. Now this nicely sized but not particularly complex study suggested other things play a bigger role.

They used actigraphs and sleep diaries to assess sleep and other tests to measure pain levels, pain ‘breadth’ across the body, mood and ‘aftersensation’ – which refers to how long pain remains in an area after its been induced.

They didn’t find that patients with poorer sleep (admittedly rather crudely measured) had more pain. Instead they found that negative moods, how widespread your pain is and how long it takes your pain system to ‘cool down’ were more important factors in the levels of pain FM patients have.
<http://www.ncbi.nlm.nih.gov/pubmed/22381437>

Mind/body techniques help some cancer survivors with debilitating fatigue feel better (but not much more)

Psychooncology. 2012 Mar;21(3):264-72. doi: 10.1002/pon.1890. Epub 2010 Dec 19. Mindfulness-based cognitive therapy reduces chronic cancer-related fatigue: a treatment study. van der Lee MLGarssen B.
Because about 30% cancer survivors suffer from a CFS-like condition (!) we’re checking out research in cancer fatigue as well. What popped up this week was (gasp!), yes, another ‘mind-body’ treatment study. (Cancer fatigue research is big into mind/body techniques……) Unfortunately there was no mention in the abstract of what mind/body approaches were used.

They found that the mind/body helped in 30% of cancer survivors. Overall the mind/body group had reduced fatigue, increased well-being but no changes in ‘functional impairment’; ie they felt better but were not significantly more functional.

MEDIA and BLOGS

 

 

Dysfunction Junction: The ANS and CFS

Dr. Alan Pocinki’s very interesting blog on Research1st demonstrates – with some eye-catching charts – how he uses autonomic nervous system testing to both understand and treat ME/CFS. He believes autonomic nervous system problems are at the heart of this disorder. With ANS getting quite a bit of research focus he is not alone.

Don’t miss this one…

http://www.research1st.com/2012/03/05/ans-dysfunction/

(Almost) An App for That

Check out Jennie Spotila’s take on an Iphone app developed by UK researcher Ether Crawley to help CFS patients monitor their energy levels and avoid crashes. Something like this is definitely needed. How did Esther Crawley’s app work out? Check out Jennies take…..

http://www.occupycfs.com/2012/03/06/app-for-that/

American Psychiatric Association Plays Hardball with CFS Blogger: Investigative Reporter Takes APA to Task

Not being in a position to enter into a legal wrangle versus a well-funded APA, I decided I had little choice but to….change the name of the site. Suzy Chapman

A new investigative reporter is taking on CFS. William Heisel has worked for the LA times and twice was short-listed for the Pulitzer Prize. In his Reporting on Health blog he recently slammed the American Psychiatric Association (APA) for threatening legal action against Suzy Chapman to change the name of her blog.

From Heisel’s blog

Over Christmas 2011, she received two “cease and desist” letters from American Psychiatric Publishing, an arm of APA. The letters were standard legal boilerplate, saying, among other things, “Your unauthorized actions may subject you to contributory infringement liability including increased damages for willful infringement.”  The letters asked “that the DSM 5 mark is removed from the domain names, and social media accounts.”

It’s important to point out that Chapman is not making money on her site. She is not selling anything and does not have advertisers. She describes herself as an “advocate for the chronic fatigue syndrome community – one of a number of non-mental health patient groups that stand to be impacted by draft proposals for DSM-5.” And, having no staff, no resources and no lawyer, she was shook up by the legal threats. I wrote to ask her about her situation, and she wrote back:

As stated in my site disclaimer, I derive no financial benefit from my site and there is no intent to confuse with APA or imply endorsement by APA. But not being in a position to enter into a legal wrangle versus a well-funded APA, I decided I had little choice but to comply with their demands and to change the site subdomain from dsm5watch.wordpress.com to dxrevisionwatch.wordpress.com and also change the name of the site.

Her web hits plummeted as a result and other sites that had her on blog rolls or had links to her previous posts suddenly lost track of her. The network of people that had been studiously following the developments in the DSM and the ICD systems on her site and sharing her work was broken apart. 

Check out more here:

The science journalist, Paul Raeburn, also reported here, on March 1:

Suzy reported that

The story of the APA’s “cease and desist” letters was broken on January 3 by Allen Frances, MD, who had chaired the Task Force for DSM-IV.  Links to previous commentaries from mental health professionals, allied professionals and the writer, Gary Greenberg, are compiled in this post on my site:

Ouch! Sedentariness effects blood sugar regulation….in just three days…..in healthy people 

Many people with CFS are quite sedentary and now comes a small study finding that just three days of reduced activity (from 10,000 steps a day to 5,000) puts a dent in your ability to regulate blood sugar. Since most people with ME/CFS probably are at or below the 5,000 step level that doing things that help regulate blood sugar; ie small, regular lower carbohydrate, higher protein/fat meals might be a good idea.
The Rise and Fall of the Biopsychosocial Model: Book Review

Alex – a Phoenix Rising Forum member – has been reviewing a book on The Rise and Fall of the Biopsychosocial Model in his blog. Check out the 3rd part here.

http://forums.phoenixrising.me/entry.php?1371-Part-Three-What-Next

13 comments

{ 13 comments… read them below or add one }

Tony Mach March 12, 2012 at 11:24 am

The first “negative” study Ruscetti has been involved in? That depends on how you define “negative study”. If there is anything novel, then it is that this was the first study with his involvement that looked for and found contamination – a slight difference in words and IMHO closer to the facts.

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Cort March 12, 2012 at 1:08 pm

I see your point :) .
As to whether XMRV will turn out to be a negative or a positive in the history of ME/CFS I guess time will tell. Right now I think things are looking pretty good on the private/non-profit side. I guess we’ll never know if they would have been better or worse if XMRV hadn’t occurred or if things had been done differently.

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Suzy Chapman March 12, 2012 at 11:48 am

Thanks for highlighting William Heisel’s two reports on the APA “cease and desist” letters issue. I think you may have given the wrong link for the second of his two reports; I’d also be pleased if you could correct my name to “Suzy.”

You’ve said:

“In his Reporting on Health blog he recently slammed the American Psychiatric Association (APA) for taking legal action against Suzie Chapman to change the name of her blog.”

I need to make an important clarification:

APA has not taken any form of “legal action” against me.

William Heisel is in the process of publishing a series of blogs around “SLAPPs” or potential “SLAPPs” and that is why he had an interest in the APA’s issuing me with letters in December.

See: http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

A cease and desist letter can be drafted and issued by anyone – one does not need to be a lawyer to issue one.

A cease-and-desist letter is a letter demanding that the recipient refrain from a certain behaviour or face legal action or potential legal action. A cease and desist letter is not a legal document and there is no legal requirement for the recipient to comply with demands made within the letter. They serve as a notice of a threat of legal action or of potential legal action.

See: http://en.wikipedia.org/wiki/Cease_and_desist

So I would like to clarify that I have not been sued, nor am I in the process of being sued and that no legal proceedings of any kind have been instigated against me on behalf of APA, on behalf of the publishing arm of APA, or on behalf of any other party.

Suzy Chapman

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Cort March 12, 2012 at 1:17 pm

Thanks Suzy, for the clarification. The result, whether they took legal action or simply threatened it – was the same, however; they forced a blog which was presenting opinions contrary to theirs – to change its URL, which caused it to lose a substantial amount of traffic and inhibited it from getting its message out. According to Heisel they didn’t that on other blogs which contained the same words. That is what Heisel was trying to get across and that is why it was included in the Buzz page.

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Cort March 13, 2012 at 1:59 pm

This story has been updated with the correct URL for the second article and links to more articles on the APA’s actions, including one to Suzy’s site. Thanks to Suzy for providing them.

Tom Kindlon March 12, 2012 at 8:15 pm

Thanks Cort.

A couple of small corrections:
“the results of the big FINE trial in Belgium were not fine”. The FINE Trial was in the UK which, like you said, had quite poor results. There was also something in Belgium – an audit of the rehab (CBT/GET) CFS clinics there which also did not find good results. Indeed, I have heard in the last few days reports that the clinics are going to close down by the end of the year.
—-
“With the NIH throwing over $2 million at two internet based studies (Antoni/Friedman) , we’ll be seeing more of this CBT approach in the future. The Friedman trial is currently recruiting adult patients”
I believe you are thinking of the psychologist/researcher/President of the IACFS/ME Fred Friedberg. There is also Ken Friedman who is a separate person.

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Tom Kindlon March 13, 2012 at 2:01 pm

Actually, I’m hearing today that the Belgian health minister has blocked the closing of the clinics.

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Cort March 13, 2012 at 2:16 pm

Darn….

Cort March 13, 2012 at 2:15 pm

Well- I’ll be gobsmacked! I think I’ve been off on the Fitnet/FINE trials for quite a while…..:(

Good to hear those clinics may be shutting down. After that miserable study its hard to imagine why they would spend the money to keep them open.

Thanks for clearing up the Friedberg/Friedman issue…I don’t think is the first time.

Reply

Jorgen Jelstad March 14, 2012 at 4:33 am

Hi,

You can find a summary of the Belgian evaluation of the ME/CFS centres in English at page 77 in this report from the governmental health agency in Belgium:
https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf
or here:
https://kce.fgov.be/nl/publication/report/chronisch-vermoeidheidssyndroom-diagnose-behandeling-en-zorgorganisatie

It is a very interesting read, and from what I know it is the only big evaluation of CBT/GET in actual clinical practice (outside a research setting), but correct me if I’m wrong. The health agency in Belgium concludes that “physical capacity did not change between start and end of the treatment” and “employment status decreased at the end of the therapy, from an average of 18,3 % of a 38h working week, to 14,9 %”.

The treated patients had high compliance with treatment, so motivation was probably not a factor, and the evaluation included more than 600 treated patients over a 2 year period.

I find that this report has not been discussed much in the CBT/GET research environment (might be because the full report is in Flemish/French), and I think I read somewhere that one of the CBT/GET proponents in Belgium commented the poor results by saying the government had “too high expectations”…whatever that means.

Just wanted to post the link, because I think this is a report that I find important in this debate since it is quite unique and comprehensive.

Kind regards,
Jorgen Jelstad
Norwegian journalist and author of the ME/CFS documentary book “De Bortgjemte” (in Norwegian) which was published in October 2011.

PS! I met you Cort at the conference in Ottawa, at the gathering in Petersons hotel room :)

Suzy Chapman March 13, 2012 at 9:56 am

Cort, I am well aware of what William Heisel was trying to get across.

In order that it is not misreported elsewhere it is important that readers understand that no legal action has been taken against me. Since readers of your report may not read these comments, I should be pleased if you would amend your report.

We have an online business to consider and my personal reputation to protect.

I should also be pleased if you would correct the spelling of my name and change the second link that you have given to the correct link for Part Two of William Heisel’s report.

Thank you.

Suzy Chapman

Reply

Tom Kindlon March 14, 2012 at 9:29 am

In reply to: Jorgen Jelstad’s message (I can’t see a reply button under it).

I agree that the information on the Belgian clinics is very interesting.

For those interested in the initial data, which has more detail, it can be found at:

Audit in French:
http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf

Audit in Dutch:
http://www.riziv.fgov.be/care/nl/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf

The data is generally in the tables – the particularly interesting data is in the Tables in the 60s.

I translated some bits of the French at:
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0702C&L=CO-CURE&P=R4161

But Jorgen Jelstad’s original piece has 5 pages in English which might be enough for most people.

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Cort March 14, 2012 at 10:23 am

Thanks Jorgen – I remember you well. I hope your family is doing well. Thanks for all the info on the Belgian authored study…pretty dismal findings on the CBT/GET study…

Reply

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