07 281 1481 or 0800 224 787 or Text 022 658 0251 [email protected]

Covid-19

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is a novel coronavirus.  The SARS-CoV-2 virus that causes COVID-19 has undergone genetic mutations over time as it adapts to humans, therefore making eradication and management very difficult. The symptoms of COVID-19 are like common illnesses such as a cold or influenza.

The New Zealand Ministry of Health has very detailed information about Covid-19: NZ Ministry of Health If you think you have COVID-19 call Healthline on 0800 358 5453 24 hours a day, seven days a week, or talk to your doctor.

Below we discuss the implications of Covid-19 and ME/CFS.  This page is a work in progress and will be updated as more information comes to hand.
CCI Support and Covid -19

CCI Support continues to provide all services for all people needing support with ME/CFS, Long COVID, Fibromyalgia and Post Viral Syndromes.

Most services are held online – this is as much to prevent our members from getting Post Exertional Malaise, as it is to protect our members from increasing the risk of contracting COVID-19.

We also hold many Social Groups in person around the country and are looking at returning to in-person meetings in 2024.

Kind Regards, The Team at CCI Support

Covid-19 and ME/CFS

If you have ANY concerns about COVID and your M.E./CFS and other conditions please speak to your GP or Specialist.

We highly recommend that you follow all health guidelines set out by the Ministry of Health.

Whilst we are not seeing that people with ME/CFS expressly are at a higher risk of dying from COVID19 than those of the general population, what we are seeing is that those with ME/CFS that contract COVID19 do risk a significant worsening of symptoms and higher risk of a relapse.  However, we are also aware that ME/CFS does not live in a vacuum and that many with ME/CFS also have comorbidities, which could pose a higher risk of complications from COVID19.

ME Action in the UK and Scotland have conducted a survey to find out how COVID19 is affecting those with ME/CFS  Preliminary Report.  Unfortunately, it is not great news with 76% of respondents reporting that Covid-19 had made their ME symptoms worse, many with long-lasting impact to symptoms for more than 6 months after infection. This is one of the reasons our medical advisor has suggested to people with ME/CFS to get the vaccination against this virus (if you are safely able to tolerate vaccinations and in conjunction with your own GP recommendations), and the risk of reaction to the vaccine does seem to be far lower than the risk of relapse from the virus itself.  Please see the section on Vaccines and ME for recommendations from the ME/CFS experts.

Emerge have some good advice re: COVID and M.E/CFS   https://www.emerge.org.au/blog/corona-virus-and-me

ANZMES – Associated New Zealand Myalgic Encephomyelitis Society Inc. has advocated on behalf of ME/CFS community in NZ.  If you currently have ME/CFS you are now able to receive the COVID-19 Pfizer/Cominarty vaccine in a reduced form if you do not wish to have full dose.  Full information here

 

Preparing for COVID-19 in your household

Reducing the risk of catching Covid if you have ME/CFS by Dr. Charles Shepherd

In November 2020 the UK-based ME Association put together a very practical 10 point guide for people with ME/CFS to reduce the risk of contracting Covid-19.

The NZ COVID 19 webpage has a great section on preparing your family for COVID.  It’s worth checking out: COVID 19 GOVT NZ

Preventing Long COVID

Dr Ros Vallings has set out some guidance in Long COVID prevention

  • stay home and rest while you still have symptoms (however mild)
  • do not indulge in hard exercise, or long work hours
  • go to bed early
  • rehabilitate very slowly and cautiously.

While this approach may not prevent a prolonged illness such as ME/CFS, you are giving yourself a good chance of regaining your pre-COVID health.

Preventing Long COVID

Long Covid

Radio New Zealand – Dr Rosamund Vallings on Covid long-haulers and CFS/ME

Long COVID and ME/CFS by Dr Charles Shepherd

Long COVID is a condition that “occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis”.  For some people, SARS-CoV-2 coronavirus (COVID-19) can cause symptoms that last weeks or months after the infection has gone. This is sometimes called post-COVID-19 syndrome or “long COVID”.

Whilst this is a new ‘condition’, we at CCIS were all too aware of its possible implication from SARS-CoV-2.  Long COVID resembles the very familiar to us (ME/CFS) Myalgic Encephalomyelitis.  We know that Long COVID seriously impacts people’s ability to go back to ‘normal’ life. It affects their mental health and may have significant economic consequences for them, their families and for the wider community.

Emeritus Professor Warren Tate says the main difference between the two is ME/CFS can be caused by several viruses, including Epstein Barr and Glandular Fever, and also by non-viral sources like trauma and agricultural chemicals, whereas what we call Long Covid is caused by just one pandemic virus, Sars-CoV-2.  Long Covid also includes unique symptoms particular to the effects of Covid-19, including hypercoagulation, a condition that causes blood to clot more easily.

Common long COVID symptoms include:

  • extreme tiredness (fatigue)
  • shortness of breath
  • chest pain or tightness
  • problems with memory and concentration (“brain fog”)
  • difficulty sleeping (insomnia)
  • heart palpitations
  • dizziness
  • pins and needles
  • joint pain
  • depression and anxiety
  • tinnitus, earaches
  • feeling sick, diarrhoea, stomach aches, loss of appetite
  • a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
  • rashes

Treatment of Long COVID is similar to that of ME/CFS – managing symptoms, pacing, and pain management, if PEM is experienced, you need to avoid exercise and activities that cause fatigue or symptoms and conserve your energy.

CCI Support does 1:1 support for people with Long COVID – you can self-refer to our services here: SELF-REFERRAL FORM

There is also a new website, the content has been created by patients who live in Aotearoa, New Zealand. Each author has canvassed other patients, spoken to doctors, and engaged with world-leading research. Every link has been fact-checked and supported by our resident medical advocates (who are also Long Covid patients themselves).  LONG COVID SUPPORT AOTEAROA

 

Where can I get extra Support

Prescriptions

Please check with your local pharmacy, some are doing home deliveries for free at this time.

 
For those who need to have home deliveries, here is another option to have medication delivered to your home.
Zoom Pharmacy https://zoompharmacy.co.nz/ can fill your prescriptions and deliver medication to your doorstep.
How it works:
*Tell your medical centre or patient portal to send your prescription to ZOOM Pharmacy
*ZOOM confirms your order with you
*Your order is delivered to your door, anywhere in New Zealand
*If you are on four or more regular pills/tablets every day, use our monthly medicines service – and get FREE prescriptions, with FREE daily sachet packs and FREE delivery to your door.*
*For other orders, prescription and delivery fees may apply.
 
Pilldrop also provide a full service digital pharmacy service

 

Community Support Agencies

Pukete House – HAMILTON

based in Hamilton food delivery and foodbank parcels.

https://www.puketehouse.org.nz/covid-19

 

Good Neighbour

Food rescue 07 394 4249 / 022 043 1040

 

Citizens Advice Bureau

For free information and advice. Can support you with any issues and connect you with other available services.

0800 367 222 free for mobiles, or by email www.cab.org.nz/contact-us

 

Salvation Army

Continue to deliver services and food parcels

Phone 07 578 4264 (option 3) or email [email protected] Facebook: Tauranga Salvation Army

 

Here to Help U

‘Here to help u’ successfully enables people to access a wide range of free support by simply submitting one help request online. It’s quick. It’s convenient. It’s help made easy…no judgement, no barriers, and no unnecessary complexity.
Mental health  Collection services Safe social connection
General support  Employment Food parcels
Prepared meals Financial Child and youth support
Technology Activities Education
Housing Cleaning supplies Medical supplies
Baby supplies Hygiene/sanitary supplies Pet food
 
Here to help u’ is a community-led effort. Many organisations have united to bring you this initiative.

 

WINZ Financial Support

“If you’ve been affected by COVID-19, we may be able to provide financial support. You may be self-isolating at home, or your work may be affected”.

https://workandincome.govt.nz/covid-19/index.html?utm_source=redirect&utm_medium=147

 

Reliable information on COVID-19

For all your questions about COVID-19 from alert levels to financial support

https://covid19.govt.nz/

 

Useful Government links

What do I need to do right now to stay healthy – MOH 

Information for people who receive home support and their family/whanau – MOH

 

Free communication and connection

WhatsApp

Use WhatsApp features, like groups, voice, and video calls

Zoom

Video calling and meetings https://zoom.us/

Facebook

Messaging, video calling https://www.facebook.com/

 

Mental Health

Helplines

1737– Free call or text 1737 any time for support from a trained counsellor.

Lifeline– 0800 543 354 or free text 4357 (HELP)

Youthline– 0800 376 633 or free text 234

Samaritans– 0800 726 666

Mental Health Foundation

Looking after mental health and well-being during COVID-19 https://www.mentalhealth.org.nz/get-help/covid-19/

Anxiety around COVID-19

Care for your Coronavirus Anxiety by Shine Tool kit – Resources for anxiety and your mental health in a global climate of uncertainty.

https://www.virusanxiety.com/?fbclid=IwAR2BZPuM9wJunh528RErEZHyry92PBdzk5aMNLjHfzc7luPl1Mi5v0ZYK1k

COVID-19 related health concerns

Healthline 0800 358 5453

 

MSD Support

Although our service centres are closed due to lockdown restrictions, we’re still here to help and can be contacted on 0800 559 009 (individuals) or 0800 778 008 (employers).  Below you’ll find information and support available.

Support for individuals

 During this time, you may be looking for new or additional ways to help you, your team or your family feel mentally well and get through.

Information and tools available to support your own and others’ mental well-being, and where to get help if you need it.

When times get tough, looking after our well-being is crucial.  These tips are based on the Five Ways to Wellbeing and Te Whare Tapa Wha.

If you feel like you’re not coping, it’s important to talk with a health professional.  There are helplines available that offer support, information, and help.  All services are available 24 hours a day, seven days a week.

Community support

We all need food and essential items such as medicine through alert level changes, so please do not try to go without.

Find a local food bank here.  Bay of Plenty Foodbanks

If you, or someone you know, has nowhere to stay tonight or in the next seven nights, you/they may be able to apply for emergency housing.

Help and support are available if you or someone you know is experiencing or exposed to family or sexual violence.

It is okay to ask for help if you or someone else is in danger. If you think someone could be harmed or may harm themselves, call the Police, even if you are unsure.  Keep an eye out for the safety and well-being of children and vulnerable adults. Talk to friends, whānau, and neighbours if you need support, or to see if they need help. Use social media to keep in touch and check in with each other. 

Food Delivery

Where to shop if your local supermarket is unavailable

Local Vege stores are doing packs and sometimes even deliveries.

some info from NZ HERALD…

Paddock to Plate

As well as big boxes of fresh produce, you’ll also find cupboard staples such as chickpeas, lentils, rice and baking ingredients, dairy products and a range of snacks and liquor. While you’re there, they also have some great Father’s Day gift boxes – a one-stop shop, you might say.  Paddock to Plate delivers nationwide and offers free shipping on orders over $125.

 

Ooooby

For local organic produce delivered to your door, you can’t go past an Oooby Box of fresh fruit and vegetables. It also has a great range of baked goods – think brioche buns, sourdoughs, croissants and gourmet sausage rolls – plus your usual supermarket go-tos, from kombucha to toilet paper to cheeses, meat and snacks.  Available in Auckland and Christchurch, delivery is free on orders over $200.

 

Asian Grocer

If you’ve been craving dumplings, sushi, or a good bowl of ramen, you’ll find the next best thing via the Asian Grocer. From pad Thai meal kits, tinned bamboo shoots, gochujang and durian cakes – if that’s your thing – to Asian noodles, rice wine vinegars, sesame oils and soy sauces, the Asian Grocer has it all.  With nationwide shipping, you can’t go past this online offering for getting Asian grocery items delivered to your door.

 

Supie

Supie is a full online supermarket that prides itself on its mission to provide food that’s extremely fresh and delivered through better sustainable means. If you want your apples just off the tree, for example, Supie might just become your new grocery go-to.
You can also filter your search by over 50 different diet types. So if you’re gluten and dairy free you can shop the site for products specific to those categories.  Delivery available throughout the Auckland region.

 

The Honest Grocer

The Honest Grocer has a great range of online goodies, with Express shipping available on loads of items like dairy, fruit & veg, and free-range meats. It also has membership options for people keen to make it their regular stop. Delivery available North Island only, excluding rural.

 

Cracker Jack

Discount shopping stores like Cracker Jack are still operating in level 4, and offer a range of Kiwi favourites as well as some international gems. Cracker Jack is only available online, but is well worth checking out if you are after some fun treats, to go alongside grocery items.  Cracker Jack postage is $6 within the North Island and $9 for the South Island.

 

Stuff also has an online directory of local businesses safely delivering food and beverage throughout lockdown.

 

We completely understand that many of our clients have food allergies and sensitivities or are struggling to get food delivered from the supermarket.

SPECIALTY FOODS

As supermarkets are selling out of a lot of specialty foods, here are a few stores that supply organic food, GF, lactose free, supplements etc.

Huckleberry Mount Maunganui

35 MacDonald Street

Mt Maunganui

ph: 07 2220098

www.huckleberry.co.nz

Shop instore

Order from website for delivery but comes from Auckland

Not currently doing deliveries from Mt M store

 

WholeFoods Bin Inn

30F Gravatt Rd

Fashion Island

Papamoa

ph: 07 5750717

www.bininn.co.nz    over 34 stores nationally

also Bethlehem store 07-2208844

Bulk bins- no personal containers allowed, given gloves and use their containers.

Shop instore

Some stores are delivering-phone first to check.

 

Plum Organics

22/2 Gravatt Rd

Fashion Island

Papamoa Beach

ph: 07 5742160

www.plumorganics.co.nz

Open for contactless shopping, come to door they will get your items. Pay across door or over the phone. they offer delivery to local area approximately $5.00

 

Ceres Auckland

82 Carbine Rd

Mt Wellington

Ph: 0508 423737

www.ceres.co.nz

Shop instore

Delivery nationwide from $5 to $11 (up to 10kgs) or over $99 freight free

 

Organic Nation

245 Commerce Street

Hamilton

ph: 07 8481155

www.organicnation.co.nz

Shop instore or order over the phone for deliveries nationwide. Delivery free over $100.

 

Commonsense Organics

147 Tory Street, Te Aro

Wellington

ph: 04 3843314

www.commonsenseorganics.co.nz

Shop instore. Order online deliveries.

I want to thank you and the team for the continuity of care especially at the moment in such a fluidly changing environment, I have never felt so supported in all my life. I am so glad CCIS exists and I’m so grateful for all the positive outcomes and emotional growth I have been experiencing as a member. Bless you for all your hard work and for being so caring. Please look after yourselves too! 💓🌷x J.M

The Team of CCI Support

RNZ: Prof Danny Altmann: the burden of long COVID

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UoA: Long COVID registry

Studies show that around 10–20% of people infected by COVID-19 may go on to develop long COVID. The University of Auckland has developed a Long COVID registry.  We recommend that people with Long COVID log themselves as having Long COVID in this registry. We hope this...

Empowering People Towards Wellness

Phone: 07 281 1481, 0800 224 787 or 022 658 0251

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