MEssenger March 2021 A note from the Operations Coordinator Welcome to another year. 2021 looks to be another year of uncertainty when it comes to Covid19. Things at Complex Chronic Illness Support are more certain. We are here and we are willing and able to support you. No matter what. We are looking forward to some new and innovative projects this year, which I’m hoping to confirm in the near future too. CCIS Waikato It is with great pleasure that I can say that MS Waikato and CCI Support have come to an agreement. CCI Support will take over all of the support for CFS/ME & FM clients from the Waikato region. Effective immediately (transition time for clients to move across is till 1 April). We now have a new Field Officer, Tracey Larsen, the current Waikato support worker (who has been there for almost 7 years) will continue in this role. Why have we done it? · MS Waikato were looking for other options for the service. · They came to us to ask if we would be interested in taking it over. INSIDE THIS ISSUE · During Covid lockdown, I was on a zoom meeting with the Charities Staff Reports ……………………...3 Service and it was their recommendation to pool resources etc. Meeting Schedule .……………….8 · It will give us a bigger foothold for funding and a bigger voice, Simply Living Blog………… 10 should we wish to make political waves. ME/CFS new information for general practitioners………… 11 · It just made sense to take up the mantal. Book Review…………………… 12 We were funded to look into the possibilities and make it happen. Recipe—Creamy White Choco- So we will now have: late Mousse……………………….13 Community Noticeboard .……14 · CCIS Western Bay of Plenty · CCIS Eastern Bay of Plenty · CCIS Lakes District · CCIS Waikato CCIS New Zealand, at this time we are only able to work with people in the Bay of Plenty and Waikato regions. This is due to funding being lim- ited outside of these areas. Once we secure National funding (which we are actively working on), we will be able to provide services further afield. Miranda Whitwell - Operations Coordinator. 53 FRASER ST, TAURANGA Hours: Tuesday to Friday 9am till 2.30pm [email protected] 07 281 1481 or 022 658 0251 From Charlottes desk in the Western Bay of Plenty I would like to begin by saying I do which are often perpetuated by the hope that everyone involved in our very systems that are designed to CCIS whanau have had the oppor- support and protect our cohort. It tunity to enjoy their part of the beau- was great to be able to say that the tiful country we call home. I would dialogue is certainly changing with not be a true Brit if I didn’t mention the current conversations around the weather and holey moley I have “long haul” Covid. We shared the loved the sunny days and the rainy exciting recent growth of our organi- days! The temperature is just becom- sation and our resourceful capacity ing comfortable and delightful like a to support those with chronic illness. Charlotte Kelp subtle but tangible weight lifted. We were also realistic in discussing Field Officer limitations around funding and re- This month we have been busy in the sources. It was an upbeat and posi- office with lots happening and many tive conversation and Angie was Phone or Txt: visitors. One included a special visit sympathetic to current circumstanc- 027 625 4449 from local Labour Party MP, Angie es, especially having personal con- Warren-Clarke. During our meeting nections to some of the conditions Office Hours we covered a lot of ground including we support. The next step is to create Tuesday to Friday the day-to-day challenges of our a report on our data for office and members, from gaining a diagnosis 8am till 1.30pm keep the conversation open. Watch to the need for more community re- this space…. sources. We also discussed limiting [email protected] ideological assumptions and stigma, Charlotte Kelp WBOP FO Lakes District—ROTORUA/TAUPO Well, it has been an interesting start to normal as we navigate life with a the year. Rotorua had its first members chronic illness. I have found discussing meeting where we learnt a lot about my feelings towards this has helped knowing your rights and what help is me. I have also realised that there is a available to us. It has been great to lot I can still do and some new things I welcome some new members into now do that I probably would not have CCIS Lakes district and hopefully we will taken up if my life remained chaotic see an increase of members at these and stressful. Yes, some days I miss the Tabitha Ramsay meetings. old me, but I am really enjoying getting to know the new me. The other useful Field Officer So, I have been pondering grieving this tip is there are counsellors available month. Not grieving for a person but who specialises in grief (of all types) Phone or Txt: grieving for the things that might have and how to cope with it. It is okay to been and for the things I use to be able 020 401 79091 seek help when we are not coping. to do that I can no longer physically manage - I definitely do not miss being I am looking forward to visiting Taupo Office Hours able to clean my bathroom, happy to next month and I will hopefully see Tuesday and Friday hand that chore over. If you are also some of you at the next Monthly Mem- 9am till 2.30pm feeling this way, I just want to let you bers meeting. know that you are not alone and that I hope you stay well and happy. [email protected] these thoughts and feelings are quite 2 Greetings from the East. So, it is a new year, a chance for a fresh start and to find some new growth in our lives. It has been wonderful to be contacted by members recently to inform me of the progress that they have made over the last year. Sharing in the joy of improvement is always heartening, I have also spoken to many members who are having a hard time now. I feel very privileged to learn about these tough days too. Many people assume that the pathway to re- covery for our conditions is a straight line, but it is usually anything but direct! That is why it is so helpful to have the community of CCIS as a shoulder to lean on when it gets tough. If you are wanting more CCIS community connection, then please attend Elizabeth McGougan one of the many monthly meetings. Each area has a physical in person Field Officer meeting and we have the more accessible Young persons (12-20 yrs) and National meeting held online where any member of our CCIS whanau is wel- Phone or Txt: come to attend these if they suit their needs better. 020 401 79092 I am looking forward to a year of connection, fresh new dawns and scatter- ing of hope for us all. I look forward to sharing this with you, my CCIS Wha- Office Hours nau. Thursday and Friday Ka kite ano au i a koutou, Elizabeth 9am - 2.30pm [email protected] From the Waikato Desk Hello Everyone My name is Tracey Larsen and have been supporting the ME/CFS & FM community in the Waikato region for the past 7 years. I am very happy to be joining the CCIS team and look forward to expanding the Waikato service under CCIS guidance. Many of you may have already met my Tracey Larsen clients via Facebook, and in time, connect with some of them through Field Officer online support meetings. If you have any family or friends in the Waikato region who require support, please feel free to pass on my details. Nga mihi. Phone or Txt: Tracey 022 154 7076 DR VALLINGS IS COMING TO SPEAK IN HAMILTON Office Hours Thursday 13th May Mon—Fri Time and Venue to be confirmed. Keep an 9am - 4.30pm eye on the Facebook page and emails from Tracey for further information about this. [email protected] 3 National Members Report Unfortunately, at this time we are only able to accept new referrals from people in the Bay of Plenty and Waikato regions. This is due to funding being limited outside of these areas. However, once we secure National funding (which we are actively working on), we hope to open up for National Members again Towards Wellness HUB It has been confirmed that we now have funding to create a 'Towards Wellness Hub on our website. So we will be working on this and hope to have it up and running by the end of the year. Essentially, it means wherever you are and whenever you want access, the Towards Wellness programme will be available. It's still in the early stages of development, but I welcome any feedback as to what you'd like to have us in- clude. Please feel free to email [email protected] any recommendations. Towards Wellness Programme Registrations are closed for Intake 1. Taking expressions of interest for Intake 2 now. Cost $200.00 for TWP1 ten two hour workshops held fortnightly, TWP2 is $100. We also take part payments too if that is needed. To register your interest email your field officer. 4 It is official - Kelsi England is officially the Field Officer Assistant.