I need your help finding research on graded exercise therapy (GET) and cognitive behavioral therapy (CBT). A Google search on “GET graded exercise therapy” returns 129,000 results. This should provide me with all the information I need. Right? Actually, this is not the case. There is an astonishing lack of good and detailed information out there.
What are CBT and GET?
CBT and GET are two controversial therapies claimed to cure or treat ME/CFS, at least by supporters of the psychological approach towards this disease.
Cognitive Behavioral Therapy or CBT is a form of psychological therapy and can be based on one of two hypotheses. The first hypothesis assumes “that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient’s understanding and coping behavior may achieve some improvement in his or her quality of life.”
The second hypothesis is based on “the premise that the patient’s impairments are learned due to wrong thinking, and considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes.” Translation of the second hypothesis: it’s just between the patient’s ears.
Graded Exercise Therapy or GET is a form of physical therapy.
Just for the record: been there, done that. I have had CBT (both hypotheses) and I know very well, plenty of first-hand experiences, what post-exertional malaise feels like.
My Quest
There is an enormous quantity of information available online on GET and CBT, but what is lacking is quality. I want to study research papers and publications in medical journals in order to understand how it is possible that the controversy between the biomedical and psychological approach on ME/CFS is still raging after twenty ears or more. In order to be able to do that I need access to those research papers and journals. Most of them are behind a paywall and I find it outrageous having to pay $30 for 24 hour access to 1 article. Research that probably was funded by the government with taxpayer’s money in the first place. Abstracts are usually available, but they don’t contain the information I am looking for and I recently learned via Bad Science that abstracts, the only information read by busy people or available without paid subscription, cannot be trusted to give a brief, but accurate summary of the academic paper.
Once I get my hands on some of those papers I intend to put on my skeptical glasses, pick them apart, and evaluate them against a set of criteria.
My hypothesis for this little research project is that most research on GET and CBT is highly questionable. There is research out there that rejects GET and CBT as a treatment for ME/CFS, but it contains as much information on patient selection and methodology as research that’s in favor of it.
My Criteria For Evaluating GET and CBT Research
Below you will find the criteria I intend to use to rate GET research. If the information I am looking for isn’t available in the paper that is quite revealing as well. I will make a similar list for CBT, but I will focus on GET first.
- Patient selection: Which of the about a dozen sets of diagnostic criteria for ME/CFS was used? How severely were the participants affected by this disease? Was the range in severity from bedridden to almost normal, or did they use a subset?
- Hypothesis: What did they want to research? What was their goal? What did they expect to find or prove?
- Methodology: How did they intend to test their hypothesis? In the case of GET: Did the patients get an individual training program or a one-size-fits-all? What was the exercise: hydrotherapy, walking, cycling, yoga, weightlifting, …? What was the intensity and duration of the exercise? At what intervals was the intensity or duration of the exercise increased? Were patients allowed to give feedback and decrease intensity and duration? What was the drop-out rate?
- Evaluation: How were the results evaluated? When was the condition of patient considered to be improved? Is improvement defined by going from bedridden to a full time job in 6 months time? Is improvement defined by an increase of 10% in physical capabilities, from being able to walk 10 minutes to being able to walk 11 minutes over a period of a month?
- Conclusion: How were the results interpreted? Were there any other explanations possible? Who funded the research? What were the qualifications of the researchers?
Need Your Help
In order to achieve this I need your help to obtain or locate these research papers and publications.
How can you help? If you know of any papers that are available online in full text, send me the link. If you have papers at home, send me the document. You can write me an email, send me a tweet, or leave a comment with links below this article.
PS: If your comment doesn’t appear immediately it’s possible that it ended up the spam folder due to too many links, but don’t worry I check it several times a week. It wont get lost.
| Research is to see what everybody else has seen, and to think what nobody else has thought |
| Albert Szent-Gyorgyi |
{ 13 comments… read them below or add one }
Google scholar is a better place to look than google, http://scholar.google.co.uk/
You’re quite right that abstracts are unreliable and paywalls our outrageous given that most of the research has been publicly-funded.
I would recommend you check out the research forum at phoenix-rising for some excellent (though sometimes very angry) discussion of ME research, including CBT and CFS:
http://www.forums.aboutmecfs.org/forumdisplay.php?23-Latest-Research
If you let me have your email address I’ll send you any relevant papers I have.
Simon,
Thank you for the links and the advice. As for the angry discussions, I think I will just have to state clearly that I am on their side.
I’ve send you my email address.
Hello Johan,
I happened to be looking for articles about CBT and ME/CFS yesterday and came across your request for links to published scientific articles. Please see below for some references I came across.
In the ME/CFS community I have noted a very strong antagonism to any hint of a Mind-Body connection relating to therapy for ME/CFS, and I am myself interested in learning more about what research has been done in the field.
Before I continue I should give you this disclaimer:
1. I have never had ME/CFS or Fibromyalgia
2. Like most physicians, I knew little about ME/CFS and felt rather helpless when my patients presented with such symptoms.
3. After my wife (herself a nurse), took ill and was diagnosed with Chronic Fatigue Syndrome, I have spent significant time and effort reading up on the topic, but certainly do not consider myself an expert.
4. My wife is now a certified Lightning Process Practitioner in California, and as such I may well have a bias, and my reflections may therefore not be entirely objective.
Here is a brief account of our story:
Sick for 13 years with ME/CFS my wife had tried everything – Standard medical therapy by a Univeristy based Rheumatologist/Immunologist. Acupuncture, elimination diets, even kinesiology, antidepressants, Provigil (transient effect), D-Ribose, Ambrotose ($2,000′s worth) and then a Chronic Fatigue Clinic. After an extensive evaluation -including 25 vials (!!!) of blood sent for for analysis – she undertook more than 1.5 years of therapy with all kinds of dietary supplements, individualized formulations (from their in-house compounding pharmacy) of thyroid hormone supplement, and even iv silver colloid infusion. When she returned one day from the Chronic Fatigue Clinic with 6 prescriptions (to take simultaneously – including Septra DS, Rifampin, Amantedine, 2 antifungals and i.m. immunoglobulin + a planned course of iv silver colloid infusions) I finally advised her stop. Amantedine and immunoglobulins had been studied in ME/CFS and found to have no significant benefits, but significant side-effects, and I could find no reasonable rationale to expose her to the potential risks of taking all the other drugs simultaneously. I am telling you this much detail to let you know we made a significant effort….
We had read about CBT, but knew of no one trained to use CBT for ME/CFS locally and had previously not had much benefit from more traditional psychotherapy. When my wife’s mom told her of a friend who had recovered in Norway using the Lightning Process – none of us were eager to pursue more ‘alternative’ therapies. We did, however, know the person her mom told us about and since there are so few ‘cures’ for this condition it did make us both curious. (if interested you may read more about her experience on her blog at http://www.BeritFrivold.com).
I am currently on vacation in Norway. Stuck in-doors due to rain, I decided I would spend some time looking at the results of the CBT-trials – as the main criticism I see of the ‘Lightning Process’ (which actually is a mind-body training program) has been the lack of randomized controlled trials.
The Lightning Process has significantly impacted the ME/CFS community in Norway – with some 40 practitioners, and evidently 20 more graduating this summer (in a total population of less than 5 million). The media is constantly featuring remarkable recovery stories, and this training has received recognition for the results observed by the medical establishment, despite the lack to date of randomized controlled trials. (We personally met a former ME/CFS patient socially this past weekend – who had been on state disability for 20 years, and now – 3 years later – is back at work. She claims to feel better than she did prior to taking ill – and certainly was looking and acting vibrant and well).
From the observations I have personally made of patients with ME/CFS (my wife included) and my reading of the literature, I am currently convinced that there has to be a triggering event (apparently in most cases a severe infection), and then some mechanism that results in a drain of physical energy, causes a ‘brain-fog’ and often also resulting in some degree of myofacial pain. I have seen no proven theories, but here is a link to a fairly recent on-line journal article that proposes such a theory behind ME/CFS: http://www.behavioralandbrainfunctions.com/content/5/1/10.
The CBT studies, according to my reading, have credible results suggesting that it may be possible to influence the clinical manifestations of ME/CFS by addressing patterns of subconscious responses to certain stimuli. The study of psychoneuroimmunology (see definition: http://en.wikipedia.org/wiki/Psychoneuroimmunology ) is a rapidly expanding field where we are learning more about the impact our conscious and subconscious mind can have on the body’s immune and nervous system.
My wife, like most patients with ME/CFS, had the physical appearance of health.
The mind-body training offered by Lightning Process was not what she was looking for and certainly not the cure she had anticipated – but it worked.
It has certainly convinced me, and after reviewing several of the clinical trials that have been using CBT, I find more reason to think that therapy focusing on ‘reprogramming’ the brain may offer the best chance of a cure from ME/CFS at this time. I have come to realize that this is not a popular position to take in the ME/CFS community – and even more so after the discovery of XMRV. And for CBT, the Lightning Process or any other mind-body approach to work, the patient have to be willing to accept these concepts, and be willing to invest significant personal effort and the sometimes challenging work of reexamining their beliefs. CBT and other mind-body approaches will therefore not be an option for all patients with ME/CFS.
Here is a link to a doctoral dissertation on CBT for ME/CFS – several trials are reviewed and treatment plan described in detail. The methodologies, including trial design and selection criteria also reviewed in detail, I hope you will find this helpful.
http://dare.ubn.kun.nl/dspace/bitstream/2066/19294/1/19294_cognbethf.pdf
Geir Frivold
You’ve written quite a long comment, maybe even longer than my article.
I am not averse to CBT (coping, first hypothesis) and GET (pacing, exercising) by definition, but how it is used to put a neurological disease in the psychological corner.
I am very skeptical about mind-body trainings (first-hand experience) and this will include the Lightning Process, but as I do not know it I will not further comment. My experience with mind-body courses is that they prepare you … to spend more money on mind-body courses. Relaxing, yes. Creating more awareness about the way you live your life, yes. Curing viral or bacterial infections, NO.
Thank you for the links, I will have a look at them.
Johan, Thank you for trying to take on such a huge amount of information.It’s a Very good idea.We will never see the truth about what is really going on in the ME/CFS world.However I never thought to research the other side to discredit their asinine stand on the issue of CBT and GET.I cannot spend much time on the computer because of almost constant migraines(because of ME).
It makes me so angry because anyone who has had this for more than a few years has already done their own CBT=learn to live with it and GET=find your own limits and do waht you can without getting worse.
Keep up the good work and thank you again from all of us who cannot do the research at this time.Maybe some day I will be well enough to really make a difference.
Teri, I’m just starting to realize how much information I will have to work my way through. I haven’t set a deadline so I can do it on my own pace.
I am glad to see that you aren’t allergic to the use of GET and CBT, basically they are synonyms for common sense, but their meaning has twisted.
Johan, I am not sure, if you are familiar with Dr. Maes findings in regards to CBT/GET for ME/CFIDS. In case you are not, may be you would find it interesting:
http://www.prohealth.com/library/showarticle.cfm?libid=14964
http://www.ediver.be/ediver/index.html
Zev,
Thanks for the links. I have heard of Dr. Maes as he is a fellow countrymen, but I am not very well acquainted with his work.
I don’t have very many full-text sources for you but I tend to go at this issue via educating about 1) the definitional confusion and 2) ME/CFS in particular and what is known (i.e. activity/exercise intolerance) and what *does* work (i.e. pacing). Here’s my set of info:
Jason LA, Najar N, Porter N, Reh C. “Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition”. J Disability Policy Studies. September 2009 vol. 20 no. 2 93-100.
not indexed on pubmed but full text available here:
http://www.cfids-cab.org/MESA/Jason-10.pdf
Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. Lakartidningen. 2002 Aug 22;99(34):3282-7. PMID: 12362846
Several CFS definitions have been developed over the years, and it is common for investigators to erroneously compare studies based on different definitions, which nevertheless all use the term CFS. Much of our “understanding” of CFS does not apply to the small group of patients who fulfill the current (1994) CDC definition.
Jason LA, Helgerson J, Torres-Harding SR, Carrico AW, Taylor RR. “Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability.” Eval Health Prof. 2003 Mar;26(1):3-22. PMID: 12629919
Carruthers et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” J CFS, Vol. 11(1) 2003, pp. 7-115 (pp 46-49). http://cfids-cab.org/MESA/ccpc-1.html
Discusses the inclusion problem and the measurement of outcomes problem; written a while ago but note that these problems have still not been solved:
Price JR, Mitchell E, Tidy E, Hunot V. “Cognitive behaviour therapy for chronic fatigue syndrome in adults.” Cochrane Database Syst Rev. 2008 Jul 16;(3):CD001027. Review.PMID: 18646067
Finds CBT effective at reducing “symptoms of fatigue” compared to “usual care” [whatever that means] and “other psychological therapies,” but notes that “The evidence base at follow-up is limited to a small group of studies with inconsistent findings. There is a lack of evidence on the comparative effectiveness of CBT alone or in combination with other treatments, and further studies are required to inform the development of effective treatment programmes for people with CFS.”
Nijs J et al. “Comparison of two exercise testing protocols in patients with chronic fatigue syndrome.” J Rehabil Res Dev. 2007;44(4):553-9. PMID: 18247252 (free full text with very good discussion of exercise barriers and physiologic findings in ME/CFS, notes the older definitions, the heterogeneity of the patient group, and the the current definition problem)
Clapp LL, et al. “Acute effects of thirty minutes of light-intensity, intermittent exercise on patients with chronic fatigue syndrome.” Phys Ther. 1999;79(8):749-56 PMID: 10440661
Discusses barriers to exercise, notes the classic problems with exercise, proposes a solution for those patients who cannot exercise for 30 minutes continuously: 3 minutes exercise, then rest sitting or lying, repeat.
Nijs J, et al. “Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial.” Clin Rehabil. 2008 May;22(5):426-35. PMID: 18441039
Cannot prevent symptoms but can prevent major flares.
Sorenson, et al. “Complement activation in a model of chronic fatigue syndrome.” Journal of Allergy and Clinical Immunology, 112: 397-403. PMID: 12897748
Exercise produces immune changes.
VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. “Postexertional malaise in women with chronic fatigue syndrome.” J Womens Health (Larchmt). 2010 Feb;19(2):239-44.
Lane RJ, Barrett MC, Woodrow D, Moss J, Fletcher R, Archard LC. “Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome.” J Neurol Neurosurg Psychiatry. 1998 Mar;64(3):362-7. PMID: 9527150
De Becker P, Roeykens J, Reynders M, McGregor N, De Meirleir K. “Exercise capacity in chronic fatigue syndrome.” Arch Intern Med. 2000 Nov 27;160(21):3270-7.
Nijs J, van Eupen I, Vandecauter J, et al. “Can pacing self-management alter physical behavior and symptom severity in chronic fatigue syndrome? A case series.” J Rehabil Res Dev. 2009;46(7):985-96.
Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. “Illness experience, depression, and anxiety in chronic fatigue syndrome.” J Psychosom Res. 2002 Jun;52(6):461-5. PMID: 12069870
“Those who believed that limiting their physical exertion was the path to recovery (55%) had lower depression and anxiety scores (P’s<.01) than their counterparts." In other words, believing that activity will make you better, makes you anxious and depressed. [Which would be because this doesn't actually work. Been there, done that. Didn't get a T-shirt, however.]
Jason L, Benton M, Torres-Harding S, Muldowney K. "The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS." Patient Educ Couns. 2009 Nov;77(2):237-41. Epub 2009 Apr 8. PMID: 19356884
Pacing makes us better.
Spotila J. "Post-Exertional Malaise: Perception and Reality." http://www.cfids.org/cfidslink/2010/080402.asp Review.
Not specifically about GET but anyone advocating this should be made aware of research such as:
Jammes Y, Steinberg JG, et al. "Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses," J Intern Med. 2009 Aug;266(2):196-206. Epub 2009 May 19. PMID: 19457057
Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." Am J Med Sci. 2003 Aug;326(2):55-60. PMID: 12920435
Hollingsworth KG, Jones DE, Taylor R, Blamire AM, Newton JL. "Impaired cardiovascular response to standing in chronic fatigue syndrome." Eur J Clin Invest. 2010 Jul;40(7):608-15. Epub 2010 May 23. PMID: 20497461
Pietrangelo T, Toniolo L, et al. "Functional characterization of muscle fibres from patients with chronic fatigue syndrome: case-control study," Int J Immunopathol Pharmacol. 2009 Apr-Jun;22(2):427-36. PMID: 19505395
Light AR, et al, "Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects," J Pain, 2009 Jul 30. [Epub ahead of print] PMID: 19647494
I found a full-text for, I think one of Jammes' studies, with a really nifty graph showing the difference in oxidative stress response comparing ME/CFS patients to healthy deconditioned people. If I can find it again, I'll send it your way.
and I almost forgot to add Jason’s new definition, which again acknowledges the inherent difficulties with activity which are definitional to ME/CFS (and it begins with an introduction to the historical and political contexts of ME/CFS):
Jason LA, Evans M, Porter N, et al. “The Development of a Revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Case Definition,” American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010 http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf
Impressive list Willow. Thank you.
Hi Johan,
I sent you a message with regards to access to scientific articles. Did you get it?
Andrew
Yes, Andrew I got it. Thank you. I apologize, I had to work my way through a backlog of messages.