It is World ME Day. Check out how Kaye lives with ME/CFS

It is World ME Day. Check out how Lucy lives with ME/CFS

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

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

[email protected]

New Zealand –

Phone or Txt: 022 658 0251

[email protected]

Bay of Plenty –

Phone or Txt: 027 625 4449

[email protected]

Waikato –

Phone or Txt: 022 154 7076

[email protected]

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.

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.

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.

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

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.

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:

ANZMES 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

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

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).

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

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

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.

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

Myra (Tauranga) has made a generous offer of “A journey of cardmaking for self esteems”

It’s once a month on a Friday or Saturday.  Contact Kelsi or Charlotte for more information.