
CCI Connect
The Complex Chronic Illness Support Newsletter
Regional Updates
Click on your area to meet your Health and Wellness Facilitator, find out what’s happening in your region
and how to get support/involved.
August 2022
Winter is certainly upon us, and wild weather through the country to boot, I hope everyone is managing to stay dry and warm.
It’s been another busy few months, trying to finish off the Towards Wellness Programme online Hub and that all important end of year audit etc. Soon we will be having the AGM, so keep an eye out for information on that.
We’ve had some new staff join the team, the invaluable Christie is now supporting the staff and Roisin is the new National Facilitator. Roisin comes to us from a Social Work background, so it’s great adding another dynamic expertise into the mix. I love how professionally diverse the team is, it’s a great tool to be able to bounce ideas off each other and learn new ways of approaching situations.
Stay safe, keep warm and I wish you a wonderful month.
Monthly Member Meetings
These are online meetings held once a month for people all over New Zealand. Each month is a new educational topic.

To join our monthly member meetings – please just click the link from any mobile device. If you can’t make the meeting – no worries. It will be available for viewing after the event on our website.
We have also planned out the topics for the next few months – so here’s a taste of what’s in store:
- September – Pain Management
- October – Dysautonomia Awareness / Immune Systems
- November – Sleep
- December – Pacing

New Eastern Bays and Lakes Facilitator
It is with great pleasure to introduce you to Phil, our new Health and Wellness Facilitator for the Eastern Bay of Plenty and Rotorua/Taupo Region. You can head over to ‘meet out team’ to see the staff profiles.

New CCIS Board President
Last week Keith stepped down as CCIS President. Fiona has kindly offered to step up into the role. We are really grateful to have her expertise and vision leading us. You can head over to ‘meet out team’ to see the staff profiles. If you know anyone who feel that would be a good fit for being on the Board, please contact us. Business skills imperative.

Did you miss this months members meeting?
It is available to watch under Meeting Resources or on our YouTube Channel now!
Meeting Resources
Blog
Recipes
Previous Newsletters
Research
CCIS Supporters
Book Reviews & Library info
Media
Meet the Team
Community Noticeboard
YouTube
Extra Resources


From Previous Newsletters…
Will you learn from ME?
It is World ME Day. Check out how Kaye lives with ME/CFS
Will you learn from ME?
It is World ME Day. Check out how Lucy lives with ME/CFS
Will you learn from ME?
It is World ME Day. Check out how Mel lives with ME/CFS

Our Touchstones
It’s always good to have a reminder about our touchstones, especially in the current environment where life is so unbalanced and emotions are running high. So this is a quick reminder about our touchstones that we observe, whether in a group situation or just in working with others. Please be aware CCIS does not recommend any particular products, services, or ideologies. We respect that everyone is on an individual journey and that we are respectfully walking alongside you on your journey. That being said we do draw on certain respectful touchstones and expect all members will also respect them.
Contribution to the group is by invitation, not by demand
Keep discussion flowing within the group
Withhold off-topic questions for individual participants until after the session
Speak your Truth in ways that respect other people’s Truth.
Speaking one’s truth does not mean interpreting, correcting, or debating what others say
Refrain from fixing, saving, advising, or correcting each other
Respond to others with open questions.
Help ‘hear each other into deeper speech’ when doing activities
Be curious and turn to wonder.
If you feel judgmental or defensive, ask yourself ‘I wonder what brought this person to his or her belief?’
Moderate patterns
Some of us are more confident to speak than others.
If you contribute often, allow space for others to contribute. If you are reserved, take opportunities to share
Watch and Observe….
Although we learn from others’ ideas and thoughts, we also learn from our own reactions and responses.
Honor confidentiality
Safety is built when we can trust that our words will remain with those with whom we choose to share, and will never be passed on to others without our explicit permission
Know it is possible to leave this room with whatever you needed
Most ‘aha moments’ occur between sessions
Refrain from sharing information about products and events until after the session
Refrain from using cellphones, unless for emergency

Phone Number Update
With new staff coming on board, it seems timely to update you on the contacts. It’s a good idea to email or text in the first instance, as staff are often on calls with clients and may not answer straight away. But if you leave a message, they will call back as soon as they are free. Alternatively, you can choose a time to talk to them, by booking an appointment here: BOOK APPOINTMENT
0800ccisup
0800 224 878
Wellington –
Phone or Txt: 027 245 5961
New Zealand –
Phone or Txt: 022 658 0251
Bay of Plenty –
Phone or Txt: 027 625 4449
Waikato –
Phone or Txt: 022 154 7076
We are still looking for a staff member for the Eastern Bay of Plenty. Please contact me if you know anyone that would be suitable.


Wellington Facilitator
It is with great pleasure to introduce you to Luisa, our new Health and Wellness Facilitator who is based in Wellington. We are so grateful to Karen for caretaking the area while we found the right person. You can head over to ‘meet out team’ to see the staff profiles.

ANZMES survey preliminary results
Thank you to our clients who participated in our initial survey, ANZMES then followed on with a larger scale and below are the findings.
At the request of the ME/CFS community, ANZMES has issued a survey relating to reactions experienced by the community to the COVID-19 Pfizer BioNTech vaccine. ANZMES also sought to ascertain prevalence of Long COVID and COVID-19 infection in the community. The opportunity was also utilised for respondents to express interest in participating in a potential fractionated dosing trial.
Vaccine effect on state of illness/wellness for 359 respondents
- 137 (38.1%) experienced no change/stay the same
- 118 (32.9%) temporarily worsened but have returned to baseline
- 71 (19.8%) worsened and not returned to baseline – relapsed
- 22 (6.1%) improved
- 11 (3.1%) worsened beyond anything experienced in illness to date – severe relapse
289 respondents did not have any new symptoms that they could attribute to the vaccine.
52 stated that they had new symptoms that they could attribute to the vaccine. These symptoms tended to be over-activation of the immune response, e.g. sore throat, swollen neck glands, allergy reactions. Of these 52 – 4 individuals have gastrointestinal issues, 2 experienced more fatigue whilst 1 indicated improved energy.

Phone Number Update
With new staff coming on board, it seems timely to update you on the contacts. It’s a good idea to email or text in the first instance, as staff are often on calls with clients and may not answer straight away. But if you leave a message, they will call back as soon as they are free. Alternatively, you can choose a time to talk to them, by booking an appointment here: BOOK APPOINTMENT
0800ccisup
0800 224 878
Wellington –
Phone or Txt: 027 245 5961
New Zealand –
Phone or Txt: 022 658 0251
Bay of Plenty –
Phone or Txt: 027 625 4449
Waikato –
Phone or Txt: 022 154 7076
We are still looking for a staff member for the Eastern Bay of Plenty. Please contact me if you know anyone that would be suitable.

CCIS AGM
CCIS AGM
The AGM was again held online this year, due to COVID-19 restrictions.
We are pleased to announce that the same Board members who have brought us through to when we are in the last year were re-elected.
- Keith Appleton – Board President/Treasurer
- Matt Appleton – Vic President
- David Harris
- Sarah Davey
- Karen Moulton
- Fiona Charlton – Waikato Representative, also the ANZMES president

Update on Dr Ros Vallings
Dr. Vallings will be retiring January 2022 and is no longer accepting any new patient referrals.
This will no doubt be a shock to a lot of people, but I am going to gradually wind down and retire after 60 years in practice!!! I feel the time is right, as I have over the years educated a lot of doctors about the illness and there are many doctors around now who are totally capable of dealing with CFS etc.
I will still carry on giving talks, keeping involved in the research and writing stuff. I would miss it all to stop entirely.
Congratulations for retiring, you will be missed terrible, but we wish you all the best. Thank you for all the years of service you have given to our ME/CFS/FM community. What a trooper!! 60 years in practice! You well and truly deserve to give yourself some time now.
Kindest regards from the CCIS team.

Vaccine Survey results
Recently we sent out an email, asking those that have had the COVID-19 vaccination how they fared, what the reactions were like for people with Complex Chronic Illnesses, like the ones we support.
EVERYONE REACTS DIFFERENTLY, and whilst we recommend vaccination, as per the medical advice from Dr. Vallings, we cannot say for a certainty how each individual will react. A reminder this was a survey, not research and is self-reported reactions only.
However the results were encouraging—184 surveys received, 166 have been vaccinated
- No clear difference between reactions and how long between vaccinations
- 51% had no improvement to original ME/CFS or FM condition, 45% had improvements for up to 3 weeks and then a return to normal symptomology and 4% medium and long term improvements since vaccination.
- 23% had no discernible reactions. 69% had medically expected reactions (of which 58% showed between 1-4 ‘medically expected’ reactions with majority being fatigue, muscle/joint pain and headache and sore arm). 8% had ‘other reactions’, including increase in original symptomology, mainly anxiety, dysautonomia issues, heart and digestion issues and Influenza symptoms, and even one 4 weeks post 2nd vaccine who suffered a stroke, this cannot be confirmed as a vaccine reaction, due to the length of time after 2nd vaccine, however it was noted. This is obviously concerning, and we really feel for those that have and are dealing with these reactions. Please contact us if you require further support.
- 45% reactions lasted only 1-2 days and 24% up to 6 days, 10% had reactions last up to 2 weeks. 15% of reactions lasted longer than 2 weeks.
If you have any concerns about getting the vaccine, please talk to your GP or health professional for the best advice for your personal circumstances.

ANZMES Update
Kia ora from ANZMES
We are very fortunate to have Dr. Anna Brooks, Immunologist at the School of Biological Sciences, Faculty of Science, University of Auckland on the ANZMES executive committee and through her professional connections we are pleased to advise you of the following:
Both IMAC and MoH recognise ANZMES as the national advisory body for all the regional organisations and groups, and as such they are open to receiving recommendations from ANZMES regarding the Pfizer COVID-19 vaccination regime and people with ME/CFS in New Zealand. They have indicated that they recognise pwME as a vulnerable subgroup who need to be fully supported in making informed decisions about vaccination. This means that all feedback provided to us by the community, and through past and current research we are able to provide IMAC and MoH with informed recommendations. This letter is currently under development and we welcome your input. So please forward any ideas you have to me directly.
Dr. Anna is currently working closely with IMAC and MoH on several solutions that we hope can be established and finalised very soon. These discussions include, whether exemptions will be made available until further data concerning adverse reactions for pwME can be gathered, fractionated dosing, and possible permanent exemptions based on research and survey data currently underway. We will update you further as soon as we have more concrete information on the decisions made by IMAC and MoH.
We are actively and urgently seeking to ascertain the interest within the ME/CFS community for fractionated rather than full doses of the COVID-19 vaccination. Interest in fractionated dosing and willing participation will determine if such research will proceed. Please encourage your members to indicate their interest, using our current survey:
If they have already filled in the survey, they can still click on the link and answer just those two questions and provide their email address at the end so that we can marry their responses up with their original submission.
The time frame for the community to indicate their interest is short, however we are in constant ongoing communications with them about the best way forward, and they are open to discussions – so please email me back if you have suggestions or queries.
Thank you
Ngā mihi
Fiona
ANZMES

Welcome Annabelle
We want to welcome Annabelle O Cinnsela to the team. Annabelle will be joining Karen and working with many of the National and Western Bay of Plenty Members.
Hello, my name is Annabelle. I have a teenage daughter and Irish husband and am originally from England. However, have lived in Tauranga Moana for 15 years after traveling for 8 years. I am in love with nature and my interest in holistic health started after completing my Clinical Aromatherapy qualification in 2002. Over the years I have managed a massage therapy business, taught/teach yoga/mindfulness, and worked/supported people of all ages with various disabilities. After completing my Bachelor of Community Health (Majoring in Public Health) in 2020, I am passionate about integrating previous holistic approaches into my work ethos. I believe there is a place for both medical and complementary approaches and that everyone is entitled to a good quality of life best suited for them. I thrive in helping people achieve this and look forward to walking this path with you. I look forward to meeting you soon.
- Bachelor of Community Health
- Diploma of Rehabilitation
- Clinical Aromatherapist
- Qualified Yoga teacher & Massage therapist

Goodbye Charlotte
Hi to all our WBOP members. It is with sadness that I will be saying goodbye to CCIS as I will be moving back to England to be with family. I have really enjoyed my time at CCI Support and it has been a real privilege getting to know each and every member. Thank you for sharing your journey with me and I wish all our members, the team and the agency the very best for the future. Take good care, Charlotte.

Meeting with Simon Bridges
Last month Simon Bridges and Sonia (his Electorate agent) took time out of their busy schedules to come to the CCI Support offices in Tauranga, to find out what services CCI Support provides. It was great being able to explain how we support people with Chronic Illnesses and being really heard and understood. Simon has also written a letter of support for our services, that we will be able to use for funding applications etc.
That means now that we have personally met with Simon Bridges, Todd Muller, Jan Tinetti and Angie Warren-Clarke (who is in the process of putting a CCIS document forward to parliament to be considered at a select committee, this document was written to advocate for members and our service).

Welcome Karen
We want to welcome Karen Maxwell to the team. Karen will be working with many of the National and Western Bay of Plenty Members.

Tauranga's 40th Celebration
On 3rd July 2021, CCI Support came together in Tauranga to celebrate the 40th anniversary of the organisation supporting people in the Bay of Plenty. We had Dr Ros Vallings, Dr Sarah Dalziel and Emeritus Professor Warren Tate speak, and had a lovely lunch and cake. It was an awesome day with 110 people sharing the occasion and we want to thank the Board, Staff and Volunteers past and present for their dedication and hard work over the years. To read more about the history, we have our story here: CCI Support Story
The Videos for the event are now available on our YouTube Channel and the PowerPoint Handouts will be available in the member resources as soon as possible.

THANK YOU
A big THANK YOU to Books a Plenty bookshop in Grey Street, Tauranga who have donated a new book to our library:
Sleep Smarter by Shawn Stevenson

Health & Wellness Facilitators
We also have a change of name for our Field Officers titles. For quite some time we’ve been thinking about the appropriate titles for the staff.
They will now be referred to as Health and Wellness Facilitators (if they have a Health qualification) and Wellness Facilitators if their qualification isn’t Health based. We really feel this encompasses what they do so well. I know it’s a mouthful so H&W Facilitators is fine too.

Launch of CCIS Waikato
It was wonderful to finally launch CCIS Waikato. On the 13th May we had a launch with 83 people coming. It was fantastic.
Dr Ros Vallings came to give an update as well. Very soon, the video will be available to share… watch this space.

THANK YOU to Kaye
Kaye has been amazing!!! She has made the Tauranga offices some Bean Bag footstool. Check these out, they are fantastic.


Local Focus Article: Living with ME
NZ Herald did a Local Focus article for us for 2021 May Awareness Day.