National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses

What are the problems this idea aims to solve?

Currently few doctors have the skills to appropriately manage patients with these highly debilitating illnesses. There is no medical specialty for postinfectious illness. In this vacuum, much of the current medical training for these illnesses is well out of date or has been captured by commercial interests proposing unevidenced and at times harmful treatments.

Most doctors are overworked. In an ideal world all doctors would upskill and also have enough time to spend with patients who may have multiple needs. Notwithstanding some valiant and appreciated individual efforts, in the real world this isn't happening at the necessary scale and many patients are suffering as a result.

Data-wise postinfectious illness in NZ is a black box. What's the epidemiology, what do patients need, which needs are unmet, do Māori and minority communities have additional unmet needs, what are the impacts on and outcomes for patients, what are the economic impacts, etc etc etc? No data is being collected on any of these questions, nothing is being measured. Meaning nothing is being improved.

A possible solution:

The establishment of a national specialist telehealth centre for postinfectious illnesses like ME/CFS, Long Covid and related illnesses would address these and several other gaps in the NZ health system. A Centre of Excellence would be excellent!

The centre would be staffed by doctors and allied health professionals specialising in these illnesses, and they would specifically follow research developments in the field and engage with patient support organisations to ensure clinical decisions are both evidence-based and relevant to patients' needs.

Patient consultations would be direct via telehealth (especially for patients so severely ill as to make travel even to their local GP, let alone specialists further afield, impossible). Additionally the centre would liaise with and support patients' own GPs and other healthcare providers, for example by assisting with correct diagnosis and by advising on up-to-date, best-practice treatment, management and support options.

The centre would be responsible, together with patient representatives, for developing education materials for the wider medical workforce.

The centre would assist with research and with recruiting research participants for approved studies into these severely understudies illnesses.

The centre would be overseen by a board with strong patient representation. While 'nothing about us without us' should be a matter of course it is particularly necessary in the case of postinfectious illness because patients have been - and continue to be - so badly failed by the NZ health system.

Why the contribution is important

Several other ideas on this topic have been put forward already. Together with the numerous comments they have attracted, these ideas describe in detail the many ways in which people with ME/CFS, Long Covid and related illnesses are being failed by the New Zealand health system.

My idea proposes a single solution to address several of those deficiencies in the clinical and research areas.

Other contributors have proposed solutions in the area of support for patients in the community; my idea  complements and supports these. Together our proposed solutions have the power to significantly improve the quality of life for a patient group that has been ignored for far too long.

by vision4ME on April 10, 2023 at 07:36PM

Current Rating

Average rating: 5.0
Based on: 5 votes

Comments

  • Posted by whia April 11, 2023 at 14:25

    As someone with lived experience of ME, Ka Pai! to the suggestions given here.

  • Posted by vision4ME April 11, 2023 at 16:38

    I forgot to add that a National Telehealth Centre of Excellence (go on, let's be ambitious and go for excellence) doesn't need to have a physical premises. That is one option, certainly, but an alternative option is a digital network of expert postinfectious illness health professionals from around the country. This would be cheaper* and quicker to establish - an important consideration. It would allow for some patients to be seen in person where that is most appropriate and also for local experts to undertake local education sessions and to more easily disseminate knowledge about ME/CFS, Long Covid and related illnesses amongst their local networks.

    I'm not at all certain anyone from Te Whatu Ora or the MoH will be reading this apart from, maybe, an intern set to produce a report destined from the outset for the bottom drawer. Here's my challenge: prove me wrong! I'm happy to discuss my ideas further. You have my email address and I ticked yes to agreeing to being contacted.

    *But it does require a funding model that adequately takes account of all the tasks expected of the experts.

  • Posted by Drum5656 April 13, 2023 at 14:21

    I agree. Whatever form it takes, we need a specialist group of medical professionals that actually understand post-viral fatigue syndromes and other similar chronic illnesses, stay up to date with research and treatment from around the world, and assist with education of medical students and established doctors to ensure that the standard of care for these patients is improved.

    Telehealth is particularly appropriate for sufferers of a disabling disease that can make travel, even as far as their local GP, difficult or impossible.

  • Posted by louisefeelingangry April 18, 2023 at 16:21

    I fully support this idea as a person with several post-infectious illnesses. A national specialist telehealth service would complement in-person medical and allied health visits.

    I'm aware of one specialist ME doctor in NZ (a GP) who offers telehealth consults (with a long waiting list as the service is so sorely needed by so many). In that case the doctor provides detailed advice and guidance to the person's local GP, to help improve future care.

    A telehealth service is appropriate for many people with these conditions, even those with mild-to-moderate illness at times. And it would be less costly than fully servicing the country with dedicated in-person clinics in every district.

    I note that an Australian charity offers a telehealth nursing service for people with ME or Long Covid in Australia. Let's go a step further and use government funding to establish a nation-wide specialist telehealth service staffed by medical and allied health experts - for all Kiwis dealing with the challenge of post-infectious illness.
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