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Groundbreaking Study

Messages
180
My GET therapist (don't ask) says there is a UK study headed up by Prof. White in progress at the moment looking into CFS and cytokine profiles, I found it slightly hard to believe but I wonder if anyone has heard of it? It does sound like even the cognitive behavioral model advocates are starting to accept the need for bio-medical research.
 
Messages
15,786
My GET therapist (don't ask) says there is a UK study headed up by Prof. White in progress at the moment looking into CFS and cytokine profiles, I found it slightly hard to believe but I wonder if anyone has heard of it? It does sound like even the cognitive behavioral model advocates are starting to accept the need for bio-medical research.

I'm concerned that they might be trying to contradict existing bio-medical research, such as by using the Oxford definition, etc.
 

Calathea

Senior Member
Messages
1,261
Hardly groundbreaking - the orthoptist Alison Hood has been researched ME eye problems for years. When I first saw her about 6 years ago, the tests she ran on me lasted for two hours and as far as I am aware, they are the only time that I have been tested in such a way that it showed up my muscles fatiguing. It is entirely proper for eye specialists to assess and research eye problems, and it is inconceivable how psychologists can think this is their territory.
 

Dolphin

Senior Member
Messages
17,567
My GET therapist (don't ask) says there is a UK study headed up by Prof. White in progress at the moment looking into CFS and cytokine profiles, I found it slightly hard to believe but I wonder if anyone has heard of it? It does sound like even the cognitive behavioral model advocates are starting to accept the need for bio-medical research.
Peter White did one before - published in 2004 - but he doesn't tend to refer to the results.

Here's an extract from a letter from him:
Five studies have examined the effect of acute exercise (not GET) on immune measures in CFS, but these have measured a number of different markers and shown inconsistent findings (913). More research is required to investigate the immune response to exercise in CFS patients (and we are currently undertaking such a study), and then to investigate the relationship between the immune markers and GET.

Free at: http://www.medicaljournals.se/jrm/content/?doi=10.2340/16501977-0261

A letter in reply pointed out that he omitted one of his own studies!
http://www.medicaljournals.se/jrm/content/?doi=10.2340/16501977-0493

Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of adverse reactions

doi: 10.2340/16501977-0493


Abstract:

Sir,
Given there is no formal system to report adverse reactions to non-pharmacological interventions such as graded exercise therapy (GET) for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), other sources of data need to be considered when evaluating safety. As noted by Clark & White, a large survey conducted in 2001 by the charity Action for ME found that 50% of patients who received graded exercise felt worse (1, 2). They also referred to a subsequent study by the same group suggesting that many patients might not have been treated by experienced therapists (3). However, the sample was small and, as in all surveys, therapist competence was not assessed.

A review of all the surveys conducted to date not only supports the view that a significant proportion of patients experience adverse reactions following GET, but also that it is premature to attribute those reactions to practitioner inexperience or inadequate training (1, 4). For example, the results of a recent survey conducted by the ME Association showed that of the 906 individuals who had received GET, 33.1% felt much worse and 23.4% judged themselves to be slightly worse (4). Similarly, a survey of patients who had been treated in the previous 3 years, i.e. following the refinement of the protocol as discussed by Clark & White, revealed that 34% of the 722 who had tried GET perceived themselves to be worse (5).

Without details of the training of the therapist and their fidelity to the treatment manual, one can only speculate about the factors associated with poor outcome. Nijs et al. (6) discussed some of the possible reasons. However, there are additional factors that deserve consideration when evaluating the efficacy and safety of GET. Firstly, the survey results may reflect, at least in part, the experiences of patients receiving treatment in a clinical setting. As has been shown in studies on other interventions, the outcomes documented in routine practice may be more realistic than those obtained in randomized controlled trials (7). Secondly, many patients may not be able to complete graded activity schedules for various reasons, including ongoing pathology. For instance, Black & McCully (8) used an accelerometer to measure activity levels before, during and after a 4-week training period consistent with GET. They documented an increase in activity counts lasting between 4 and 10 days, and this was associated with higher scores for pain and fatigue. The inability to sustain target activity levels was also noted by Friedberg (9), who followed the progress of one patient during 26 sessions of GET. He recorded a 10.6% decrease in mean weekly step counts, leading Friedberg to speculate that the subjective measures of improvement might have been the result of activity substitution and a corresponding reduction in perceived stress.

Finally, we were surprised that neither of the letters cited the research by White et al. (10). This elegant study supports the growing evidence of abnormal metabolic and immunological reactions to exercise in subsets with CFS. Although their sample was small, White et al. found elevated concentrations of the pro-inflammatory cytokine tumour necrosis factor-alpha at time-points of 3 h and 3 days after exercise. In addition, they documented increased levels of the anti-inflammatory cytokine transforming growth factor-beta after normal exertion. We therefore concur with Nijs et al. (6) as well as other researchers, that GET may not be appropriate for all patients with CFS and that pacing may provide a useful, acceptable and safe alternative (6, 11, 12).

Authors:

Tom Kindlon , Ellen M Goudsmit


1. Clark LV, White PD. Chronic fatigue syndrome: prevention of symptom exacerbations in chronic fatigue syndrome. J Rehabil Med 2008; 40: 882883. [CrossRef]

2. Action for ME (AfME). Severely neglected ME in the UK. London: Action for ME; 2001 [cited 2009 Aug 12]. Available from: http://www.afme.org.uk/res/img/resources/Severely Neglected.pdf [CrossRef]

3. Action for ME (AFME) Members Survey Conducted Spring 2003 [cited 2009 Aug 12] Available from: http://www.afme.org.uk/res/img/resources/afme members survey.pdf. [CrossRef]

4. ME Essential Spring 2009 edition. Gawcott, England: ME Association; 2009. [CrossRef]

5. Action for ME and Association of Young People with ME. ME 2008: What progress? 2008 May [cited 2009 Aug 12]. Available from: http://www.afme.org.uk/res/img/resources/Survey
Summary%20Report%202008.pdf. [CrossRef]

6. Nijs J, Paul L, Wallman K. Response to letter to the editor by Lucy Clark and Peter D White. J Rehabil Med 2008; 40: 883884. [CrossRef]

7. Rawlins M. De Testimonio: On the evidence for decisions about the use of therapeutic interventions. Clin Med 2008; 8: 579588. [CrossRef]

8. Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dyn Med 2005; 28; 4:10. Available from: http://www.dynamic-med.com/content/4/1/10. [CrossRef]

9. Friedberg F. Does graded activity increase activity? A case study of chronic fatigue syndrome. J Behav Ther Exp Psychiatry 2002; 33: 203215. [CrossRef]

10. White PD, Nye KE, Pinching AJ, Yap TM, Power N, Vleck V, et al. Immunological changes after both exercise and activity in chronic fatigue syndrome: a pilot study. J Chronic Fatigue Syndrome 2004; 12: 5166. [CrossRef]

11. Nijs J, Paul L, Wallman K. Special report. Chronic fatigue syndrome: an approach to combining self-management with graded exercise to avoid exacerbations. J Rehabil Med 2008; 40; 241247. [CrossRef]

12. Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of energy modulation on physical fucntioning and fatigue severity among patients with ME/CFS. Patient Educ Counsel 2009; 77: 237-241. [CrossRef]
I have to wonder whether he published it in the JoCFS, which was not PubMed-listed, so it could more easily ignored by him and/or might not be noticed as much by others.

I follow Peter White relatively closely. I'm not convinced he's changed.
 

Guido den Broeder

Senior Member
Messages
278
Location
Rotterdam, The Netherlands
My GET therapist (don't ask) says there is a UK study headed up by Prof. White in progress at the moment looking into CFS and cytokine profiles, I found it slightly hard to believe but I wonder if anyone has heard of it? It does sound like even the cognitive behavioral model advocates are starting to accept the need for bio-medical research.
There is such a study being conducted in Rotterdam, by the auto-immunology group.
 

Guido den Broeder

Senior Member
Messages
278
Location
Rotterdam, The Netherlands
Vision (as well as hearing) problems are quite common in ME. One issue is a difference in focus direction between the two eyes. A common phenomenon within the population, but as long as you are healthy, your brain compensates for it. When you have ME, your brain can't maintain the compensation. Your vision will blurr, and one eye may get lazy.

Normal glasses that only correct for + or - won't remedy that. You need prism glasses, and some therapy to go along with that in order to get the measurement right.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
...dyslexia which can cause fatigue.
But HOW can you prove that, given that dyslexia is a diagnosis handed out without an objective test? All you're really saying is that some people who meet the criteria for dyslexia also have fatigue..but we don't know what causes their fatigue.
 
Messages
13,774
But HOW can you prove that, given that dyslexia is a diagnosis handed out without an objective test? All you're really saying is that some people who meet the criteria for dyslexia also have fatigue..but we don't know what causes their fatigue.

I wasn't even saying that.

Possibly related: I was reading about some vision/motion problem related to dyslexia which can cause fatigue. It all looked a bit uncertain though, so I didn't do much research on it.

It all looked a bit uncertain, so I didn't do much research on it, and certainly didn't think it had been proven.

I would expect that any problems with perception would be likely to lead to some increase in fatiguability, but as you say, this is all so difficult to measure, that I expect we are a long way from truly understanding these things.