20,000+ People in NZ have M.E/CFS with NO Medical Specialist


 There are 20,000+  people with M.E/Chronic Fatigue Syndrome and more with Long Covid. There are no Medical Specialists or Specialist Clinics to help us. All we have are GP’s most of which do not or want to understand M.E/CFS. Most Medical professionals still think M.E/CFS is a psychological or psychiatric disease. There is now a wealth of research out there to prove that it is not. 
 See the new Nice Guidelines for M.E/CFS https://www.nice.org.uk/guidance/ng206/chapter/recommendations

 There is an accredited online course for GP’s which most GP's have not done even when they have patients with M.E.

 This course should be compulsory for all GP's as they are the only medical help we have.
ME/CFS should be a compulsory subject taught in all Medical Schools in NZ as is now happening in the UK.

 We need support clinics that will give patients the tools to find their baseline energy availability and how to build up some activity slowly when appropriate. Also to be able to work with patients to access mobility aids, appropriate medications, care packages and referral to other medical specialities when necessary.


 I am an ex Nurse/Midwife who had to leave work due to sudden severe M.E/CFS. I’m guessing no one from Te Whatu Ora ‐ Te Tai Tokerau is going to read this comment but here’s hoping they will!

Why the contribution is important

Because there are 20,000+ people in NZ struggling with this condition with no access to Specialist Support.

by annaustin on March 12, 2023 at 08:20AM

Current Rating

Average rating: 5.0
Based on: 21 votes

Comments

  • Posted by AceTimelord March 13, 2023 at 06:24

    Absolutely! This! The neglect and harm over decades from a health system that refuses to acknowledge, let alone assist, those with ME/CFS and/or fibro is horrific.
    I grew up with both parents diagnosed with CFS, and there was no help, and active harm, from the medical system

  • Posted by listay1 March 29, 2023 at 15:34

    There's probably closer to 230,000 people in NZ who had or currently have long-covid going off the 1:10 ratio that has been seen worldwide.

    MOH believes around 40,000 patients have LC now which isn't even close to the numbers being reported.

  • Posted by listay1 March 29, 2023 at 15:36

    Long Covid clinics were pushed around as help, but none exist in the major centers. What does it say when they were on TV and radio... And then didn't exist when patients asked their GP to go there.

  • Posted by Deanne March 31, 2023 at 14:27

    I support the recommendations and additional comments made here.
    A diagnosis of MECFS means you are treated like a pariah by the health system instead of a severely unwell patient deserving of treatment. Sadly, this disdain includes children.
    Prior to my son being diagnosed with MECFS at the age of 13, my experience of the NZ health system in paediatrics was excellent. His older sister was diagnosed with Type 1 Diabetes at 12 and the care she received was thorough, caring, regular, and well-coordinated across all disciplines involved. In contrast my son’s “care” has been intermittent, inadequate and, at times, inappropriate.
    My daughter, now 19, leads a full life at university in another city and continues to be well supported by the health system. My son is now 17 and his health has continued to decline to the point where he is mostly bedbound. He is now categorised as having Severe MECFS.
    I can’t help but wonder if my son had received more comprehensive & appropriate care from his Paediatricians early on, he may have been able to make a recovery instead of becoming more debilitated. It is perplexing that NZ paediatricians can diagnose a child with MECFS and then not treat them according to current guidelines which are easily accessible. https://www.frontiersin.org/[…]/full
    Instead, my son was given referrals to a psychologist and a physiotherapist who offered a programme of High Intensity Interval Training. At subsequent appointments the underlying message was that he should be trying harder and that getting back to school was more important than feeling better.
    Caring for our son is having a massive detrimental effect on us emotionally, socially, and financially.
    At this point in time our son’s future looks very bleak. Te Whatu Ora has the power to change that.

  • Posted by BevHicksonSnook April 01, 2023 at 13:52

    Couldn't agree more.
    My GP does not have the time or inclination by his own admission to be able to offer me anything more than pills he hopes might help. There is no other help. I would not manage with out the online support group.

  • Posted by waterbabyNZ April 01, 2023 at 15:56

    Where is the realistic help for those with CFS/ME with a condition that fluctuates from day to day, hour to hour. I am the Parent of a 29 year old with CFS/ME diagnosed 5 years ago. Her GP is very nice but knows little about CFS/ME so we have educated her a little as we go along. She has been to see Dr Vallings at our expense before she retired and with her treatment plan she has improved a little. Her supplements to aid in this improvement are not covered under Disability. She is classed as mild to Moderate which means I drive her to the shops and appointments, she can do a little housework and meal prep but most days I do her housework, her washing, help look after pets, dispense her medication, attend appointments with her, do or arrange maintenance on her home and gardens, help with groceries and food prep. I live with the constant worry of how she will manage if something happens to me as I am 64 years old. An Occupational Therapist when we asked what would happen if I was not around and she "Flared downward" on a weekend he said she would just have to stay in bed till Monday with no support. There is very little to nothing in the way of support for those with CFS/ME in the community and certainly very little funding. We tried for Home Help and it never happened as it is easier if you need Home Care but for those with CFS/ME find it is easier to not shower but the housework always need doing even if it is just dishes and meal prep. A major issue occurs if she or I temporarily can't cook or get food or then not be able to use your arms to eat it or to drink it. I have great sympathy with those coming along with Long Covid that will be promised something but nothing will happen and in time they will join those who get nothing in the way of help from the Medical System especially while they are under Chronic Health Conditions for Funding. CFS/ME and Long Covid people need Multi Disciplinary teams to manage there care who are knowledgeable in what will help and what will harm to try to improve there health. They need to be Funded under Disability so what they get is what they need and managed by them and there families.

  • Posted by whia April 01, 2023 at 17:34

    Also agree. I have given up so many things, including my work in health, my home (downsized to a studio to stay afloat financially) and nearly all my social activities and creative pursuits, due to energy constraints and symptom management. I have to be assertive around trialling low and slow with medication doctors want to give me because so many of them can make me much worse. It would be so nice instead, to have my condition understood and be able to feel medically safe and supported (one of many ME/cfs symptoms is being a drug micro-responder).

  • Posted by FYRBAL April 01, 2023 at 20:04

    I support any idea that calls for an increase in training, awareness and resources for those with Long Covid and ME/CFS.

  • Posted by vision4ME April 11, 2023 at 14:51

    I support annaaustin's call for better medical care for people living with ME/CFS. The comments bear witness to the desperate need for improvement.
    Annaaustin's suggestion to make full use of existing GP education modules is a good one. There are several excellent modules out there. Unfortunately there are some outdated ones, too, so Te Whatu Ora should provide clear guidance to providers of medical education of the standards expected and Te Whatu Ora should actively promote high quality CME modules to GPs and other health professionals. Making full use of existing resources is an important immediate step to improve outcomes for people with ME/CFS.
    More long-term, my 'idea' titled "National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses" outlines how improving medical care and medical education can be tackled in tandem.
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