New Zealand: HealthInfo ME/CFS pages - feedback please before 25 May 2022

They both look pretty good compared with the NHS's offering.

 

Given the changes with the NICE guidelines since the doc was last updated, would it be useful to emphasise that (graded) exercise is not a treatment and can lead to a severe deterioration? Do you want to add a comment that many people with long Covid are going on to be diagnosed with ME/CFS and that this may significantly increase the prevalence in NZ?

 

the “Ask about support” doesn’t sort of read well to me. To who? GP/MECFS Canterbury/peer support? Perhaps “Ask about support and income services” then the explanatory sentence (so when person goes to GP can specifically ask about it, not just income support, because maybe they have a GP based health navigator who will help with the process of application to access disability services usually preserved for the visibly disabled, things like reduced cost recreational activities with the local council, help with getting a disabled parking permit for the supermarket/shopping. Maybe wheelchair, decent bed. And maybe also know about local iwi/Pasifika health initiatives to get funding and also ones that target lower socioeconomic groups. (I gather MECFS Canterbury help this process but health navigators are becoming more embedded in GP practices or closely aligned to one).

Medications: perhaps mention sometimes people can be sensitive to medication and to be aware of this when taking OTC medication, supplements and alternative remedies and to mention this to any Health Care Professional especially pharmacists, dentists and HCP’s outside their regular doctor.

 

Any idea what's going to happen to those pages after the big reshuffle of the health system?

Anyway, a few quick thoughts:

• start the intro with PEM instead of fatigue, and mention the fatigue where the PEM is now, basically swap the sections
  
• nuance the 'does not get better with rest' into something to the effect of 'does not get better as normally expected with normal amounts of rest' (if it didn't get better, or at least less bad, with rest at all there wouldn't be any point in pacing and none of us would ever 'recover' from a bout of PEM)
• add wordfinding to the trouble concentrating section
• add a 'very severe' description
• add medication as an option for OI
• add a warning to the alternative therapies section that some can interact with medication or not be safe for an individual for other reasons

Also, in the context of ME, I have issues with advice to "see your doctor for a review of your illness once a year, and whenever you get new symptoms or your symptoms get much worse than usual" and also with referral to pain management clinics. Many of us don't have access to a doctor even remotely competent in ME, and too many pain management specialists subscribe to the exercise is medicine for everything paradigm. The sad fact is that avoidance of healthcare is still often the safest option for us. But I don't expect the people at the DHB are ready to face that truth...

 

Thanks, @Hutan. A few more suggestions.

Diagnosing and self-care for ME/CFS

Perhaps note that advice in the linked webpage 'Tips for sleeping well (sleep hygiene)' can be counterproductive in ME/CFS. Trying to stick to regular waking and sleeping times may cause worsening. Sleep hygiene advice to only use the bed for sleep is likely to be inappropriate for the percentage that need to use the bed for rest periods or are mostly/always in bed due to severity. The advice to engage in regular physical activity and be physically active on that linked page is not appropriate for people with ME/CFS. When you follow the linked pages through to those on physical activity, it's clear that it isn't geared for pwme:

https://www.healthinfo.org.nz/how-active-should-I-be.htm

I'm not sure generally about the suggestion to increase salt for OI, but I think it probably isn't sound blanket advice as readers may have other health conditions and so think it should probably be removed. If retained it should probably read 'increase salt intake' rather than 'eat more salt'

The PEM definition gives a 12-24 hour lag period. I think NICE gives 12-48 hours in its PEM definition. It might be better to be broader so that associations between exertion and effects aren't discounted by pwme trying to self manage because they don't fall within that smaller window.

Add memory problems to description of cognitive issues.

Overview page

I don't think it correct to say 'research is starting to suggest that people with ME/CFS may have changes at a cellular level', this should probably be removed.

Suggest adding a sentence here that if ME/CFS is suspected, appropriate management for ME/CFS shouldn't be delayed whilst investigations to rule out other conditions are ongoing.

Clarify that the first clause is referring to post exertional malaise and that there is often a delay of ~12-48/72 hours before worsening. Clarify that the second clause is referring to OI and that this is not the same as PEM; sitting or standing may not necessarily lead to worsening, though obviously it may do.

Re severity categories, could include mention that pwme may be more limited in some aspects of their condition than in others and so definitions of severity given are not fast categories.

Add memory problems to description of cognitive issues.

Perhaps suggest adding NICE 2021 guideline to the list of resources.

 

No, not off the top of my head, but clinically that seems to be the case. The go low, go slow is an important prescribing guideline for vulnerable groups with chronic health problems with complex symptom presentations like in our patient group due to the lack of understanding of the pathological process. Concept of do no harm. Sort of like a rule of thumb because many sedating and psychiatric medications can suddenly destabilise a person’s condition. Often standard dosing of meds by GP and psychiatrists in our patient group would be around a 1/4 of a “healthy” person and care would be taken to not titrate further until patient feels symptoms have improved and no concerning side effects. Also pwME/CFS take a lot of supplements and herbal remedies that might interfere with drug metabolism (that they are unwilling to disclose to their doctor).

 

I'm not sure that it would have weight as a reference in this context, but in case, the NICE rec on drug tolerance was framed as based on committee member clinical experience (Pharmacological management evidence review F section 1.1.16, p.95).

 

“ It must last six months in adults and three months in children.” Needs “at least” between ‘last’ and ‘six’.
(I noticed the same problem on health navigator today - suggesting to the uninitiated that ME/CFS tends to be a six month illness)

I realised after I wrote this that we are now in 2023, not 2022, so you’re not still editing it. But the comment stands I guess so posting it anyway. (But if I can get the year off I might not be proof reading all that well, eh?

Thanks for getting it to this level. If this had been the info when I first got sick, I like to think I’d be in a better position now.