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

[Hutan]

New Zealand's Canterbury District Health Board's pages on ME/CFS are up for review. I think it must have been a couple of years ago that we got these pages rewritten, and we were very happy with the result, it was a massive improvement. There were of course some things though that weren't perfect.

The audience is the general public, with the content being aligned with the online guidance for doctors. It needs to be a brief overview with key points, with links to sources of good information and support.

If you have a moment, please review the two pages and make suggestions for improvement.

Overview of ME / CFS
Diagnosing and self-care for ME/CFS

Thanks for your help.

 

[Wonko]

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

 

[SNT Gatchaman]

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?

 

[hibiscuswahine]

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.

 

[Ravn]

New Zealand's Canterbury District Health Board's pages on ME/CFS are up for review.

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...

 

[Hutan]

Thanks everyone, great comments.

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...

Yes, it's difficult. I regarded the requirement for annual review as a win in the guideline for doctors - it normalises the approach to the illness, it makes it clear that this is a significant illness that should not be ignored. But yes, while doctors still have such a distorted view of our illness, turning up to the doctor aiming to discuss ME/CFS can feel a bit like offering up oneself for more disbelief and harm. I have found that the people I have dealt with making guidelines in the DHB to be very sympathetic and helpful, but yes, they can't change the way doctors think of ME/CFS overnight.

I think we could do something about the health pathway on chronic pain in this regional health authority - it's just a matter of finding time to advocate for it.

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

It's going to be an interesting time. (For those not in New Zealand, the multitude of District Health Boards, some small and some large like the Canterbury District Health Board, are being amalgamated to, hopefully, produce a fairer health system and one with less unnecessary duplication.)

I think the Canterbury District Health Board is seen as a leader in the provision of online guidance in New Zealand, certainly to doctors and allied health professionals, as a result of their development of the Health Pathways system which is widely used in New Zealand district health boards. So, their approach may well prevail, and it's possible that some of the people working on this regionally will end up having national roles. I hope so, anyway.

I'm not so sure about the online guidance to patients. The HealthInfo platform is a bit clunky, it looks a bit outdated. Perhaps Health Info will be be the basis of a national online guidance facility, given it is written to reflect the content of the Health Pathways. At the very least, when national content is being developed, it's likely the HealthInfo information will have some influence on what is adopted. I think it's worth getting the HealthInfo content as good as it can be - the more good content in the world, the less room there is for the bad.

 

[Hutan]

Sorry, I should have been clearer about how the review process is working. As someone involved in the last rewrite, I've been asked to provide feedback. It isn't a public review process. I'll use your points here to make suggestions.

 

[Sarah]

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:

Everyone should do at least 2½ hours of moderate-intensity activity spread throughout the week. One way to do this is to do 30 minutes most days of the week.

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.

ME/CFS can be difficult to diagnose, and other conditions have to be ruled out before a diagnosis is made. There is no specific test to diagnose ME/CFS.

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.

Your symptoms get worse after physical or mental exertion, and when you stand or sit upright.

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.

 

[Hutan]

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.

HW, do you know of any trial evidence supporting the idea that people with ME/CFS are sensitive to medication at higher rates than other people?

I'm not disputing that many people with ME/CFS have found that they are sensitive to medication of course. I myself did not do well on ciprofloxacin. But I think I need something a bit stronger than 'lots of patients say this is so'.

 

[hibiscuswahine]

HW, do you know of any trial evidence supporting the idea that people with ME/CFS are sensitive to medication at higher rates than other people?

I'm not disputing that many people with ME/CFS have found that they are sensitive to medication of course. I myself did not do well on ciprofloxacin. But I think I need something a bit stronger than 'lots of patients say this is so'.

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).

 

[Hutan]

Add memory problems to description of cognitive issues.

Add memory problems to description of cognitive issues.

Thanks for those detailed and helpful comments Sarah.

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'

Yes, I've tried to find research specifically about salt in ME/CFS. I don't think there's really much solid evidence for it helping in ME/CFS, although some indication it is useful in POTS. I agree that the benefit of including the suggestion in the online advice is likely to cause more harm than good - it really needs to be delivered by a health professional who can help make the risk assessment and provide guidance. (On the language - the writers were very clear that the language had to be very simple - for example, we even had to argue to have 'fatigue' used rather than 'tiredness'.)

 

[Sarah]

ut I think I need something a bit stronger than 'lots of patients say this is so

clinically that seems to be the case.

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).

Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment. Consider:

- starting medicines at a lower dose than in usual clinical practice

- gradually increasing the dose if the medicine is tolerated.

Evidence Review

The committee highlighted that in their clinical experience people with ME/CFS may be more intolerant of drug treatment and have more severe adverse and side effects than people who do not have ME/CFS. The committee agreed it was important to raise awareness to clinicians of possible greater intolerance in this group in order to allow consideration when medications are being prescribed and taken, especially as people with ME/CFS may not initially know they are sensitive to medicines. Therefore, the committee made a recommendation to be aware that people with ME/CFS may be more intolerant of drug treatment and have more severe adverse and side effects. The comittee discussed using a cautious approach to medicines prescribing, which includes starting the medicine at a lower dose than in usual clinical practice and monitoring how the person responds before adjusting the dose. The committee agreed that this type of approach would reduce the risk of harm and recommended that it be considered.

 

[Hutan]

An update on the HealthInfo content:

There was an issue about the Māori name for ME/CFS that was added to the pages, ruha karioi. We discussed it on the New Zealand news thread.

It seemed to have just been made up for the purpose of inclusion in the HealthInfo page. Ruha is tired or exhausted. The word chosen to be the equivalent of 'chronic', karioi, can mean lingering, but has negative connotations to do with shirking and procrastination. When used as a noun, it can mean lazybones and shirker.

In response to the feedback that this wasn't a great disease name and that no one in the ME/CFS community seemed to have heard of it before, the HealthInfo person replaced 'ruha karioi' with 'ME/CFS' in the Māori headings. So, a good outcome, thanks for your help.

 

[Subtropical Island]

“ 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.