Chronic fatigue syndrome management

Chronic fatigue syndrome management

Many patients do not fully recover from chronic fatigue syndrome (CFS) [cite journal |author=Rimes KA, Chalder T |title=Treatments for chronic fatigue syndrome |journal=Occup Med (Lond) |volume=55 |issue=1 |pages=32–9 |year=2005 |month=Jan |pmid=15699088 |doi=10.1093/occmed/kqi015 |url=}] and there is no effective treatment. Instead, chronic fatigue syndrome must be managed using strategies that aim to reduce the symptoms and consequences of CFS.

Behavioral interventions

Behavioral interventions include cognitive behavioral therapy (CBT) and graded exercise therapy (GET). A systematic review published in the "Journal of the Royal Society of Medicine" (October 2006) [cite journal |author=Chambers D, Bagnall AM, Hempel S, Forbes C |title=Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review |journal=Journal of the Royal Society of Medicine |volume=99 |issue=10 |pages=506–20 |year=2006 |pmid=17021301 |doi=10.1258/jrsm.99.10.506] found that these were the only two known treatments that showed some promise. The statement of principal findings regarding CBT/GET was: "A number of RCTs (randomised controlled trials) suggest that behavioural interventions, including elements of CBT, GET and rehabilitation, may reduce symptoms and improve physical functioning of people with CFS/ME." However some uncertainty still exists over the efficacy of these treatments, especially GET for severely affected patients, as none were included in studies that passed the inclusion criteria of the review. The review also emphasized the need for more and better conducted studies of both therapies, as well as more research into the adverse affects of treatments in general as they may be under reported or poorly quantified. As mentioned in the review under the 'unanswered questions/further research' section, very few studies assessed the effectiveness of "interventions for children and young people and for severely affected patients." More research is needed on severely affected patients in general; because many treatments and studies require patients to attend a clinic, and those with the worst symptoms often receive the least support from health and social services. The authors also expressed concern about possible bias in the CFS literature, a lack of uniformity in case definitions and study inclusion/exclusion criteria (studies using any CFS criteria were included), and the basic information provided about the participants; which they state makes it difficult to assess the generalizability of the findings of many of these studies. This review found that no intervention had been proved effective in restoring the ability to work. An earlier systematic review published in 2002 also found this, although CBT was "lending a possible association between improvement in the ability to work and an increase in the number of patients employed". This earlier review also found that no specific patient characteristics seemed to serve as best predictors of positive employment outcomes in CFS patients, although did find that depression of greater severity was associated with unemployment. [cite journal |author=Ross SD, Levine C, Ganz N, "et al" |title=Systematic review of the current literature related to disability and chronic fatigue syndrome |journal=Evid Rep Technol Assess (Summ) |volume= |issue=66 |pages=1–3 |year=2002 |month=Dec |pmid=12647509 |doi= |url=] However, another systematic review published in 2004 concluded "Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work." [cite journal |author=Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB |title=Disability and chronic fatigue syndrome: a focus on function |journal=Arch. Intern. Med. |volume=164 |issue=10 |pages=1098–107 |year=2004 |pmid=15159267 |doi=10.1001/archinte.164.10.1098]

The "Gibson Report" (Report of the Group on Scientific Research into Myalgic Encephalomyelitis 2006), [ Report of the Group on Scientific Research into Myalgic Encephalomyelitis] 2006] a political inquiry into the science of CFS provides information about treating CFS with CBT and/or GET. However, the report has been criticised by the ME Association, for: being poorly conducted, misrepresentations, omissions, lack of references, factual inaccuracies or bias, and even potentially damaging implications. [ [ Action for ME's "Review of Gibson Inquiry Report"] (27 November 2006)] [ [ The ME Association's "Gibson Report: key points raised by The ME Association"] (6 February 2007)] [ [ The One Click Group's "The One Click Group Report - The Gibson 'Inquiry'"] (17 January 2007)] The "25% ME Group", a UK advocacy support group for severely affected M.E. sufferers, state, in their submission to the Gibson report, [ [ Gibson Inquiry Information:final sub to Gibson] ] that both CBT and GET are unhelpful and may be dangerous/harmful to severely affected CFS patients. The discrepancy between trial results and patient group surveys has been noted by the P.A.C.E. trial group, who are conducting a larger more detailed study into CBT and GET which is currently underway and is due for completion in 2009. [cite journal |author=White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R |title=Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy |journal=BMC Neurol |volume=7 |issue= |pages=6 |year=2007 |pmid=17397525 |pmc=2147058 |doi=10.1186/1471-2377-7-6 |url=] However, it has without explanation dropped all use of objective measures such as actometers since the original research plan was published.

Cognitive behavioral therapy

A systematic review of RCTs has found that cognitive behavioural therapy administered by highly skilled therapists in specialist centres is an effective intervention for people with CFS. [ Chronic fatigue syndrome - Musculoskeletal disorders - BMJ Clinical Evidence ] ] A recent (2008) systematic review of CBT concluded, "CBT is more effective than usual care for reducing fatigue symptoms in adults with CFS, with 40% of participants assigned to CBT showing clinical response at post-treatment, in comparison with 26% assigned to usual care control.", however, it also stated that the benefits of CBT in sustaining clinical response at follow up are inconclusive. [cite journal |author=Price JR, Mitchell E, Tidy E, Hunot V |title=Cognitive behaviour therapy for chronic fatigue syndrome in adults |journal=Cochrane Database Syst Rev |volume= |issue=3 |pages=CD001027 |year=2008 |pmid=18646067 |doi=10.1002/14651858.CD001027.pub2 |url=] One uncontrolled study with no follow-up found that a "full recovery" occurred in 23% of CFS patients after CBT. [cite journal |author=Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW, White PD |title=Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? |journal=Psychother Psychosom |volume=76 |issue=3 |pages=171–6 |year=2007 |pmid=17426416 |doi=10.1159/000099844 |url=]

Some CFS patients have comorbid depression and/or anxiety. [cite journal |author=Youssefi M, Linkowski P |title= [Chronic fatigue syndrome: psychiatric perspectives] |language=French |journal=Rev Med Brux |volume=23 |issue=4 |pages=A299–304 |year=2002 |month=Sep |pmid=12422451 |doi= |url=] Dr. David Smith, a former medical advisor to the ME Association in the UK who reports to have successfully treated many children using antidepressants and therapy, [cite journal |author=Patel MX, Smith DG, Chalder T, Wessely S |title=Chronic fatigue syndrome in children: a cross sectional survey |journal=Arch. Dis. Child. |volume=88 |issue=10 |pages=894–8 |year=2003 |month=Oct |pmid=14500310 |pmc=1719321 |doi= |url=] offers a possible explanation on his website. [cite web |url= |title=Chronic Fatigue Syndrome, Understanding its Treatment and Management |format= |work= |accessdate=] One study involving 22 CFS patients who underwent CBT showed a significant improvement in reported health status, measured physical activity (15%) and tested cognitive performance (6% in 1 of the 3 tests used), and that the CBT resulted in a significant increase in grey matter volume in the prefrontal cortex (regain of 14% towards normal), which was related to the improvement in cognitive speed during the choice reaction time task. [cite journal |author=de Lange FP, Koers A, Kalkman JS, "et al" |title=Increase in prefrontal cortical volume following cognitive behavioural therapy in patients with chronic fatigue syndrome |journal=Brain |volume=131 |issue=Pt 8 |pages=2172–80 |year=2008 |month=Aug |pmid=18587150 |doi=10.1093/brain/awn140 |url=]

When commenting on the relevance of CBT for CFS, the Gibson Report states that it has a role to play in treatment but at best is only a partial answer and more research is needed; it also states that CBT in general is helpful to many people with other illnesses, however it is notable that RCTs of CBT in cancer have found no improvements in the course of the disease at all, and most of the helpfulness that CBT may afford illness in general is concerning matters such as e.g. high risk behaviour in a minority of AIDS patients. Dr Eleanor Stein states that the most commonly used worldwide model of illness management, the Stanford Model of Chronic Disease Self Management, shows benefits for diabetes and hypertension (conditions in which lifestyle play a strong role), but less benefit for arthritis. [Stein E. New Horizons: International Conference on ME/CFS Biomedical Research. 25th May 2007 ME Research UK & Irish ME Trust, Edinburgh Conference Centre [] ] Carruthers and Van de Sande in their Overview of the Canadian Consensus Guidelines, [ "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document"; authored by Carruthers and van de Sande; published in 2005, ISBN 0-9739335-0-X, PDF] ] note that supportive counselling should not be mis-termed CBT to avoid misleading confusion between the two treatments amongst patients and doctors.

Another systematic review on CBT finds that "CBT was associated with a significant positive effect on fatigue, symptoms, physical functioning and school attendance." The reviewers state that the quality of many recent trials on CBT are lower quality randomized controlled trials or trials that did not involve random allocation. The reviewers also state that one recent, good quality trial of CBT in children and adolescence supports the effectiveness of CBT. The reviewers state that reasons for withdrawals typically remain unreported, and that a degree of publication bias seems to be present in CFS/ME literature as a whole. In one study, the effect of CBT has been demonstrated up to five years after therapy. [cite journal |author=Deale A, Husain K, Chalder T, Wessely S |title=Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study |journal=Am J Psychiatry |volume=158 |issue=12 |pages=2038–42 |year=2001 |month=Dec |pmid=11729022 |doi= |url=] A large evaluation study in Belgium, however, lead to the conclusion that while on average CBT may cause patients to feel somewhat better, objective measurement shows no reduction in their disability. The report mentions that the results of the Belgian study are not as good as the results reported in published evidence based studies. The report considers that patient selection was different, and furthermore that most evidence-based studies used individual therapy, whereas the Belgian reference centres performed the therapy mostly in groups of 3-11 patients. [ [ RIZIV, "Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS), evaluatierapport 2002-2004", Brussels, July 2006] ] [ [] English summary by Stouten, B] Another recent study found that CBT improved self-reported cognitive impairment but not actual neuropsychological test performance [cite journal |author=Knoop H, Prins JB, Stulemeijer M, van der Meer JW, Bleijenberg G |title=The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance |journal=J. Neurol. Neurosurg. Psychiatr. |volume=78 |issue=4 |pages=434–6 |year=2007 |month=Apr |pmid=17369597 |doi=10.1136/jnnp.2006.100974 |url=] . A previous study by some of the same authors found no relationship between neuropsychological impairment on standardized tests and self-reported memory and concentration problems, that neuropsychological functioning was not related to fatigue or depression, and that slowed speed of information processing and motor speed were related to low levels of physical activity [cite journal |author=Vercoulen JH, Bazelmans E, Swanink CM, "et al" |title=Evaluating neuropsychological impairment in chronic fatigue syndrome |journal=J Clin Exp Neuropsychol |volume=20 |issue=2 |pages=144–56 |year=1998 |month=Apr |pmid=9777468 |doi= |url=] ). According to researchers of one study, CBT usually aims at reducing fatigue but can also reduce pain, although higher pain at baseline was associated with a negative treatment outcome. [cite journal |author=Knoop H, Stulemeijer M, Prins JB, van der Meer JW, Bleijenberg G |title=Is cognitive behaviour therapy for chronic fatigue syndrome also effective for pain symptoms? |journal=Behav Res Ther |volume=45 |issue=9 |pages=2034–43 |year=2007 |month=Sep |pmid=17451642 |doi=10.1016/j.brat.2007.03.002 |url=] The place of CBT for children, young people and the severely affected is uncertain.Fact|date=September 2008 There is also little research into the efficacy of CBT for severely affected patients.

Related treatments

Many CFS patients face the stress of economic and legal problems. CFS sufferers may lose jobs, marriages, and the ability to work at all, causing severe financial loss and distress. A lawyer, social worker, or counsellor can be beneficial in helping the patient determine their best course,Fact|date=September 2008 and may assist the patient with applying for work-related disability, social programs, and other aid. A study which included 45 CFS patients found that psychodynamic counselling has comparable effectiveness to cognitive behavioral therapy (CBT) in the treatment of chronic fatigue. [cite journal |author=Ridsdale L, Godfrey E, Chalder T, "et al" |title=Chronic fatigue in general practice: is counselling as good as cognitive behaviour therapy? A UK randomised trial |journal=Br J Gen Pract |volume=51 |issue=462 |pages=19–24 |year=2001 |month=Jan |pmid=11271868 |pmc=1313894 |doi= |url=]

Graded exercise therapy

Several rehabilitation programs have been proposed which involve supervised or self-monitored graded exercise or activity. Fact|date=January 2008 Such programs are designed to overcome deconditioning, increase strength and cardiovascular health Fact|date=January 2008, despite that there is no evidence that deconditioning is a significant factor in activity limitation, or that patients do not make the most of their restricted ability. Programs are said to incorporate considerable education wherein the sufferer learns to start at an appropriate level of activity (based upon intensity and duration) which is incrementally increased, at a rate which supposedly does not substantially increase symptoms. Fact|date=January 2008

The Gibson Report states GET is one of the most common treatments for CFS in the UK. Dr. Peter White found that in four studies 50-70% of patients improved with GET, but stated that GET (combined with CBT) has only been shown to be efficacious in small trials. The Gibson Report mentions the 25% ME Group statement that "only 5% of their members found GET helpful and 95% found it unhelpful". Many patients who submitted personal evidence to the Gibson inquiry said that they had similarly negative experiences which they attributed to their participation in GET. The authors of the report expressed concern about GET treatment guidelines, arguing that there are potential risks of GET for CFS patients, "Some of our evidence suggests that GET carries some risk and patients should be advised of this." The authors stated that the CFS guidelines lacked cautions about these possible risks and they said that patients should be checked for heart trouble before attempting GET. The authors said that the perception that GET may lead to deterioration in health "has lent fuel to their often serious antipathy to the doctors offering it." A New Zealand study suggests that GET may result in self-reported improvement by reducing the degree to which patients focus on their symptoms [cite journal |author=Moss-Morris R, Sharon C, Tobin R, Baldi JC |title=A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change |journal=J Health Psychol |volume=10 |issue=2 |pages=245–59 |year=2005 |month=Mar |pmid=15723894 |doi=10.1177/1359105305049774 |url=] although there is no evidence that CFS patients disproportionately focus on symptoms, rather that common CFS definitions fail to describe patients' symptomology adequately.

The UK High Court ruled on 17th June 2008 that a judicial review of the NICE guidelines on ME/CFS should be heard over two days in the autumn [] . The lawyer representing two ME sufferers who brought the case briefly outlined reasons why the guideline development process was flawed, leading to its sweeping recommmendation of CBT, GET and activity management. In brief, the following criticisms were made at the hearing:

* The York Review was biased in favour of a small number of RCTs into CBT and GET (7 and 5 respectively) while evidence from patients and stakeholders was relegated to the least significance.

* NICE had limited patient choice by specifically advising against the use of other treatments such as antiviral drugs.

* Membership of the guideline development group (GDG) was biased and lacked specialists from relevant areas of medicine such as an endocrinologist and a virologist.

* Despite it being an intrinsic purpose of NICE, a satisfactory estimate of cost effectiveness was not performed. No analysis had been performed for GET and for CBT, this involved an RCT where there was an insignificant difference in outcomes between the active treatment and controls.

* Failure to consider the cause of ME/CFS was an "irrational" negligence.

* In addition to the weakness of CBT and GET evidence, there was also risk of serious harm and GET could even "prove fatal" [] .

Energy envelope theory

In 1999 Jason, presenting an overview of CFS management, formulated the basic principle of the envelope theory as:

"By not overexerting themselves, people with CFS can avoid the setbacks and relapses that commonly occur in response to overexertion while increasing their tolerance to activity."

The authors argued that "by collecting time series data on fluctuations in energy levels, important clinical observations can be made in respect to a client's unique condition and experience with CFS."cite journal |author=Jason LA, Melrose H, Lerman A, "et al" |title=Managing chronic fatigue syndrome: overview and case study |journal=AAOHN J |volume=47 |issue=1 |pages=17–21 |year=1999 |month=Jan |pmid=10205371 |doi= |url=]

In 2008, Jason published the results of a study into the effectiveness of the envelope theory in CFS. The findings of the study confirmed the validity of the Energy Envelope Theory use in CFS as they indicate that those participants who expended energy beyond their level of perceived daily energy suffered from more fatigue, pain, anxiety and depression, had a poorer quality of life and were more disabled.cite journal |author=Jason L |title=The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome |journal=AAOHN J |volume=56 |issue=5 |pages=189–95 |year=2008 |month=May |pmid=18578185]


A pilot study published in the journal "Physiother Theory Pract." in Mar 2008 indicates a subgroup of CFS patients may benefit from breathing retraining, to increase lung tidal volume and lower respiratory rates. cite journal |author=Nijs J, Adriaens J, Schuermans D, Buyl R, Vincken W |title=Breathing retraining in patients with chronic fatigue syndrome: a pilot study |journal=Physiother Theory Pract |volume=24 |issue=2 |pages=83–94 |year=2008 |pmid=18432511 |doi=10.1080/09593980701429406 |url=]


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