Thanks for the link, Firestormm. The NICE (2007) CFS definition seems to me to be entirely hypocritical with respect to PEM. Though it purports to require PEM, the definition nevertheless makes PEM, as defined by the CCC, optional.
How does the same document both describe exercise intolerance and prescribe exercise? Perhaps by using a bogus definition of PEM. As defined by the CCC, PEM signifies the “tendency for other associated symptoms within the patient's cluster of symptoms to worsen:”
Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patients cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.
NICE (2007), however, requires that patients have only one additional symptom, the first listed being insomnia. And it doesn't require that any symptom other than fatigue be exacerbated by exertion. Instead, “physical or mental exertion makes symptoms worse” is itself listed as an optional symptom.
Unlike the CCC that describes “a pathologically slow recovery period – usually 24 hours or longer,” NICE (2007) describes “slow recovery over several days.” The ICC goes further, of course, explaining that "a relapse can last days, weeks or longer:"
Postexertional neuroimmune exhaustion (PENE pen-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
If scientific evidence were needed to suggest the cardinal feature of ME is logically inconsistent with prescribing of GET, then the Pacific Exercise Lab's test-retest protocol surely provides it.
The NICE Guidelines probably represent a much more inclusive CFS definition than Fukuda (1994). NICE (2007) estimates a CFS prevalence of at least 0.2% - 0.4%. But last year,
Nacul et al. found a 0.19% prevalence using Fukuda (1994) and 0.11% using the CCC (2003) in three regions of England. The Collin
et al. study that you've posted here flags the possible over-diagnosis of CFS in England. It discusses the need “to investigate whether services that make a diagnosis of CFS in 100% of cases are missing important alternative diagnoses such as sleep disorders or depression.”
However, I do of course recognise that not everyone has been exposed to the same degree of care and support that has in the past been available in my area.
The Collins
et al. study reports that the median rate of assessments was “10-fold lower than the lowest prevalence of CFS/ME estimated from population studies.” This huge discrepancy between incidence and prevalence must reflect either a “very low uptake of specialist services" or their complete absence. The authors suggest a number of reasons for very low uptake, including poor long-term prognosis, the use “religion, denial and behavioural disengagement to cope,” and poor awareness of services or belief in services on the part of GPs. They don't contemplate that there could be a lack of confidence in services on the part of patients themselves.
The authors do recommend that particular attention be paid to patients in deprived parts of England and to those from ethnic minorities. “New services need to be set up in areas that have no service and, based on the estimated prevalence of CFS/ME, provision needs to be expanded in many areas that do have a service.”
As soon as CCC is accepted and implemented by NICE I will back it to the hilt when it comes to translating this into management practice on a locally delivered basis.
The UK establishment continues to obscure ME. Although I haven't read though the full NICE (2007) document, I understand that “the lack of any substantive allusion to this Canadian Consensus Document (2003) in the current GDG guidelines is a serious omission, and one which diminishes the authority of the GDG (Stakeholder Comments; 23rd November 2006).”
I'm looking forward now to the opening of the new Complex Chronic Disease Clinic in Vancouver. We're fortunate here in that our federal government sponsored the CCC and our provincial government's
Clinic is intended:
for people who suffer from a group of complex chronic diseases which include but are not limited to:
- Myalgic Encephalomyelitis
- Chronic Fatigue Syndrome
- Fibromyalgia Syndrome
- Lyme disease
Notice the Clinic's separation of ME and CFS.