Tuesday, September 9, 2014

How Great Britain Fails 250,000 Patients with ME/CFS

Last June, Clare McDermott et al. published a study entitled "What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise" (published in the BMJ, a subsidiary of the British Medical Association).

The study, which was part of McDermott's PhD fellowship, evaluated specialist care for patients with severe ME/CFS in 49 specialist centers in Great Britain via an email survey.

All 49 centers replied, providing an accurate picture of the range of services available to the severely ill ME/CFS population.

(You can read the full paper here.)

Survey results

The results of the survey were disheartening. One-third of specialist ME/CFS centers provided no service at all for housebound patients. A little over half (55%) of the centers treated patients with severe ME/CFS. The remaining centers (12%) offered occasional or minimal support "where funding allowed." There was only one NHS unit providing specialist inpatient ME/CFS care in the entire country.

The authors' final remarks concerning the paucity of care were that "findings highlight substantial variation in access to specialist care for patients with severe presentation of CFS/ME. Where treatment was provided, this appeared to comply with NICE recommendations for this patient group."

Available treatments - The not-so-NICE guidelines

An additional component of this paper was a brief analysis of the type of care provided to patients with ME/CFS. In Great Britain, services for severely ill patients are supposed to follow the NICE guidelines:
  • Management of severe CFS/ME is difficult and complex and healthcare professionals should recognise that specialist expertise is needed when planning and providing care for people with severe CFS/ME. [emphasis added] 
  • Diagnosis, investigations, management and follow-up care for people with severe CFS/ME should be supervised or supported by a specialist in CFS/ME. 
  • When making decisions about prolonged bed rest, healthcare professionals should seek advice from a specialist experienced in the care of people with severe CFS/ME. The significant physical and psychological risks associated with prolonged bed rest should be taken into account. 
  • Healthcare professionals working with people with severe CFS/ME who are in bed most (or all) of the time, should explain the associated risks (such as postural hypotension, deep venous thrombosis, osteoporosis, pressure sores and deconditioning) and monitor these.
  • People with severe CFS/ME should be offered an individually tailored activity management programme as the core therapeutic strategy, which may be delivered at home, or using telephone or email if appropriate, drawing on the principles of cognitive–behavioural therapy (CBT) and graded exercise therapy (GET). [emphasis added]
(NICE 2007 guidelines on severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) extract, page number 305)
While the guidelines state quite clearly that management of severe CFS/ME is "difficult and complex," specialist care, as defined by the guidelines, is quite simple. Core therapeutic strategies consist of CBT and GET, which may or may not be overseen by a physician (telephone calls and emails are considered sufficient).

Although the guidelines state that diagnosis, management and follow-up care should be supervised by a specialist, compliance with this provision is not consistent. For example, some services stated that while they used CBT, they did not have a qualified CBT therapist on the clinical team.

Even when centers reported having a physician on their staff, or other trained professionals, the question remains of whether the treatments and therapies offered by these centers have any real value for the population they are supposed to be serving.

One Size Fits None

Below is a detailed list of the treatment strategies employed by the specialist care services offered by NHS (taken from the McDermott study).

Table 1

Therapeutic approaches used (in combination) by CFS/ME services for severely affected patients
TherapyNumber of services using this approachPercentage of services using this approach
Activity management2893
CBT2583
Graded activity2480
Mindfulness therapy2273
Lifestyle management2273
Dietary advice2170
Pacing (within graded activity, not adaptive pacing)1757
Graded exercise therapy1343
Counselling1033
CBT = cognitive–behavioral therapy

Anyone who is familiar with ME/CFS - whether they be researchers, experts, or patients - would consider the list of "treatments" employed by these services to be ludicrous. Most, if not all, of these therapies are useless for a population that is bedbound. Exercise therapy, including graded activity as part of GET, is harmful for ME/CFS patients (Twisk and Maes 2009). Given the cardiac abnormalities experienced by ME/CFS patients, exercise could even prove fatal. (Dr. Melvin Ramsay reported that the only ME patients who had died under his care were former athletes who had gone out on the playing field while ill.)

Aside from the far-fetched claim that these therapies are "individually tailored," there is no evidence that these therapies are beneficial treatments for any patient with ME/CFS, regardless of illness severity. For that matter, there is no evidence that the therapies on this list are appropriate treatments for patients suffering from any illness. The dietary advice offered to ME/CFS patients, for example, "Drinking enough fluid, [eating] adequate fruit and vegetables, [and] reducing caffeine intake" is something physicians recommend to everybody, regardless of their state of health.

The advice to exercise is also non-specific, and is a component of the general set of recommendations given by every physician to all patients. In contrast to previous medical advice - now considered antiquated - current medical dogma considers exercise to be a panacea that cures all. (As evidenced by the "harms" associated with bed rest mentioned in the NICE guidelines.) Meditation, counseling and CBT are also currently in fashion. However, neither meditation nor counseling will reverse the course of an illness, or slow its progression. While they may make a patient feel better by reducing anxiety, so will a chat with a caring friend, watching a distracting comedy, or taking anxiolytics.
If a physician in the U.S. limited his or her treatments to those on the NICE guidelines for their cancer or heart disease patients (like ME/CFS, neither has a cure), he/she would have his or her medical license revoked, and possibly face a civil lawsuit.
The McDermott et al. report indicates that severely ill patients are underserved by the NHS, even when there is care. However, the evidence also suggests that none of the patients in the UK with ME/CFS have state-sponsored access to effective treatment (e.g. antivirals, immune modulators, treatment for secondary infections, mitochondrial support, palliation of symptoms, such as insomnia and pain, and so on).

One can only conclude that when psychiatrists and proponents of the "it's all in their heads" theory hijack medical care, all patients will suffer the consequences of institutionalized neglect.

4 comments:

  1. The whole thing is totally disgusting. Patients are tossed out like a dirty dish towel.

    ReplyDelete
  2. Clare McDermott is involved in a new study:

    http://forums.phoenixrising.me/index.php?threads/nlp-feasibility-study-for-a-community-based-intervention-for-individuals-with-severe-cfs-me-uk.32205/

    Feasibility study for a community based intervention for individuals with severe CFS/ME

    Intervention

    "Recovery strategies based on the Neuro-Linguistic Programming concept of 'modelling success', adapted for use in severe CFS/ME through in-depth Patient and Public Involvement development work conducted over two years. The intervention includes a range of NLP techniques, delivered through audio recordings, direct therapist contact and social contact via peer recovery support group. One year active intervention + one year support and follow-up."

    ReplyDelete
  3. "Healthcare professionals working with people with severe CFS/ME who are in bed most (or all) of the time, should explain the associated risks...and monitor these."

    This point is the one that particular concerned me when I read it as it gives the impression bedridden patients are simply choosing not to get up against medical advice despite the health risks it poses. I spent two years competely bedridden and believe me I'd have been out of bed every day if it had been at all possible. During that time I had no medical input whatsoever let alone any monitering for such conditions.

    I find it interesting that the FINE trial carried out at the same time as the PACE trials found no measurable benefit to pragmatic rehabilitation or cognitive treatments in severely affected patients yet this study is rarely mentioned in the media and doctors continue to push such treatments.

    If the inpatient ward the study refers to is the unit in Leeds then it is a liason psychiatry ward that takes ony two ME/CFS patients at any given time (a shocking statistic for a country with 250,000 sufferers), the other six beds on the ward are used for patients with primarily psychiatric conditions.

    ReplyDelete
  4. New Diet Taps into Pioneering Idea to Help Dieters LOSE 20 Pounds in Only 21 Days!

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