NZ Auckland CFS Clinical Guidance Revision 2019

The recently revised Auckland clinical guidance document is not officially available to the public (just medical professionals) but has been circulated by some advocates; this is how I first obtained a copy of the document.
Some of the issues are:

Name: Chronic Fatigue Syndrome - does not give any alternative names

Introduction:

• says it is a controversial disease;

• says it is thought that there is persistent overactivity of the immune system, which seems to be an oversimplification;

• diagnosis is one of exclusion, ignoring the positive requirement for PEM;

• list of typical features is presented in a way that will mean that people with gradual onset may be excluded from diagnosis

• focus is on fatigue, with PEM mentioned as a 'additional symptom'

• Types of people affected

This means that someone with gradual onset who has had symptoms for a while might be excluded. There is no reason why a manual worker or nurse with backache resulting from over-use could not get ME/CFS. The use of 'somatic' seems to murkily infer the opposite of somatic here.

Saying it is highly functioning individuals that are typically affected suggests that the patients have brought the illness upon themselves.​

• "Once the inciting illness (if any) is resolved, the physical examination is typically normal." This isn't completely true, the 10 minute standing test will often show abnormalities.

• Does not give an accurate sense of how debilitating the illness is or that the majority of people with it are unable to work or attend school.

• Does not discuss prognosis.

Assessment:

• Doesn't use the SEID criteria. This of course is arguable, but I think those criteria work best in a clinical setting as they prioritise PEM and are simple.

• The criteria don't explicitly mention Post-Exertional Malaise. The closest they come to are "The patient experiences inappropriate levels of malaise or fatigue after exertion". Doctors are instructed to 'ask about pathologically slow recovery - 24 hours or longer'. There is nothing about delayed onset. Although the word 'malaise' is used, it isn't defined.

• "Emotional overload – may lead to "crash" periods and anxiety" - this is the only context for a mention of 'crashes'.

• There are detailed instructions to doctors on how to assess the appearance of the patient - 'alertness, grooming, weight loss' - which surely is something that doctors learn to do early in their training. But, there is no indication as to what poor grooming or weight loss might actually indicate in the context of an assessment for ME/CFS.

• In contrast, these are the full instructions given for any assessment relating to orthostatic intolerance, a topic that many doctors aren't up to date on:

There is nothing about having the patients lie down for 10 minutes and then stand for 10 minutes with periodic measurement, and nothing about tachycardia (and of course nothing about the latest finding that some patients don't show heart rate or blood pressure changes but still feel very unwell due to reduced cerebral perfusion).​

• Testing

Surely doctors know enough to not be ordering tests without justification. What this sentence does is to promote the idea that there is nothing to be found and to raise the bar for "good clinical indication".

This also promotes the idea that there is never anything to be found and that the patient has health anxiety or is vulnerable to it. Many MS patients are diagnosed with CFS for years before being diagnosed with MS and so miss out on early treatment and support precisely because of this attitude. The patient is facing the loss of their lifestyle, their employment, their hopes for their future and those of their family. A decent diagnostic effort is warranted, as treatable causes may be found and it will give the patient more peace of mind.

If the doctor seems dismissive and not open to considering possibilities, the patient will go and find other doctors and completed investigations will probably be unnecessarily repeated or, in desperation the patient will turn to all sorts of quackery. In the process, the patient will lose trust in the medical system and may not seek care for new symptoms that perhaps signal other diseases. It’s much better and cheaper for the first doctor to take a pretty rigorous and systematic approach to diagnosis.

There's no mention of 2xCPETs. I think this should be mentioned as an emerging test. Even if doctors don't send their patients off for such a test, they should be aware of the evidence from the repeat CPET studies of the impact on workloads achievable at ventilatory threshold. For patients needing to support insurance claims, this test can be important.
​

Management:

• There is a single sentence suggesting that patients be advised to use pacing so as to not over-exert themselves. There is a link to 'pacing' which I can't access, so I'm not sure how it is defined though.

• Followup

Also good.​

• Immunisations

Good intent, but when exactly is the patient in good health?​

• There is a long section on sleep hygiene. The impression is that this is very important. "Over-sleeping" is to be discouraged. "Keep the bedroom for sleeping and sex"; "Avoid watching the clock if awake at night".
  "Engage in relaxing activities such as listening or music or having a bath (sic)".
  The level of detail is ridiculous, especially as the core sleep problem in ME/CFS is unrefreshing sleep; not everyone has insomnia, and sleep disturbance is often due to pain, rather than not following a good sleep ritual. The requirement to not over-sleep is particularly concerning in the context of young people, whose bodies may well need very extended periods of sleep in order to grow; I doubt that there is any evidence to support the idea that it's good to force a young person with ME/CFS sleeping 20 hours a day to only sleep 9 or so hours a day. In my experience, it would not even be possible. These guidelines are therefore adding stress to ME/CFS patients and their families.

• Exercise

So, no GET is an advance. But the doctor is still being told to encourage 'gentle exercise guided by symptoms', rather than encourage 'rest guided by symptoms' which is far more likely to be needed, given that people are trying to keep living their lives, but with less energy.

There is not really evidence that gentle exercise is more appropriate than very short intense exercise. The work hasn’t been done. It’s possible that a few minutes of high intensity exercise may be safer for people with ME/CFS and more useful for health than an hour of walking.

The best thing that can be said is that the person should try to maintain activity at a level that minimises the occurrence of post- exertional malaise. Encouraging gentle exercise when the person hardly has enough energy to cook themselves a decent meal would be counter-productive.​

• Diet

Not too bad, but it ignores the reality that most people are going to experiment with restricted diets. Rather than the doctor forbidding restricted diets, it would be better for the doctor to ask that the patient discuss plans with the doctor before trying anything.​

• Magnesium, CoQ10 and B12 injections are suggested to be considered. Detailed recommendations are given for B12. It is acknowledged that the treatment is controversial but suggested that there is increasing evidence.

A better approach would be to note that there is no good evidence that supplements help, but that many patients report that magnesium, CoQ10 and B12 injections are helpful.​

• Orthostatic Intolerance

Again only orthostatic hypotension is mentioned, rather than a broader reference to orthostatic intolerance.​

• The section on stress management recommends deep breathing exercises, mindfulness and psychological therapies including CBT. It is suggested that CBT aims to reduce the distress and

So, there's no acknowledgement that the type of CBT applied to ME/CFS has most often been to correct false illness beliefs. Many doctors have the impression that CBT and mindfulness type approaches are curative, and many CBT practitioners' ideas of what "realistic goals" for ME/CFS patients might be will not be helpful. Therapy conducted by people who don't understand ME/CFS can cause harm; this risk needs to be explicitly addressed.​

• The utility of online support groups is not mentioned.

• It is suggested that a trial of antidepressants be considered if there is a history of depression or symptoms overlapping with fibromyalgia or depression, or even if there is no depression:

In many cases, signs of depression will be a reasonable response to being in a distressing and uncertain situation. Rather than jumping to drug treatments, it would be better if approaches that reduce the distress were taken first. The guidelines make no mention of informing family, schools and employers that the patient is indeed sick and that the illness can not be corrected by more effort on the part of the patient.

Given that we don’t know what is causing this disease and it’s possible that neurotransmitters may be part of the story, and given that SSRIs are widely reported on patient forums to cause more harm than good, caution seems warranted. Suggesting GPs experiment with anti-depressants (other than low-dose tricyclics for pain and insomnia) for people who don't have depression seems like a bad idea.

• Sources of information

Some of the links are good e.g. the CDC information and the Frontiers in Paediatrics Primer. The IACFS/ME 2014 document is probably out of date and departs from evidence a bit much to be appropriate. The BMJ Best Practice document is not a good document to link to (I understand it recommends CBT and GET, underpinned by 'false illness beliefs' theory.)
Patient information links include the Health Navigator page which is all about tiredness. There is a link to some pages by Dr Vallings; the link doesn't work for me so I don't know what is on those, they may be ok.
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In summary, I think this guideline revision was a missed opportunity to significantly improve care for people with ME/CFS.

 

Are NZ patients going to send the people who produce this a formal response with comments? Seems like a good way to demonstrate the value of patient involvement in future. And you’ve more or less already written it @Hutan

 

It's difficult @NelliePledge. I'm not aware of any process that would accommodate patient feedback on the clinical guidelines, especially given that they are part of a platform that is only accessible to medical professionals. There might even be issues with copyright and confidentiality. I'll look into it.

I believe that Dr Vallings was involved and she is Medical Advisor for ANZMES (Associated NZ ME Society, the national organisation), so the clinical guideline developers probably believe that they have taken reasonable steps to produce a document reflecting patient-supported best practice.

I have tried to contact ANZMES about other things but I don't get replies. I'm not sure I would have any better luck with this.

Other than ANZMES, ME Auckland might be well placed to provide feedback. I don't know what their current views are about clinical management of ME/CFS. Possibly ME Awareness NZ might be interested to provide feedback?

 

hi @Hutan i guessed there probably isnt an existing process but it seems a shame if youve got the energy available to build on what youve already done and if you are able to engage with ANZMES and or Dr Vallings and they dont show any interest maybe some of you as NZ patients of S4ME could get together as a group to send it in anyway - maybe with support from an MP if any are any good. And as @Ravn says if there isnt a way for patients to feed into guidelines there should be. From the outside its surprising from NZ.