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My Personal Update of Severe ME/CFS Research

Posted Feb 28 2014 10:20am

This is my personal updates about the severe ME/CFS research by National Centre for Neuroimmunology and Emerging Diseases ( NCNED ) I participated.

The team had updated all research participants by email that the research paper was written. And after reviews from an international editorial board and reviewers, it has been accepted for publication. When the paper is released online, they will let us know.

I came across with the published paper before their updates. (The world wide ME/CFS community is really good at spotting new information.) I hope NCNED doesn’t mind me sharing it before they officially acknowledge us.) I assume they are extremely busy with preparation of opening of the Specialised ME/CFS Clinic.)

Analysis of the Relationship between Immune Dysfunction and Symptom Severity in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) | Journal of Clinical & Cellular Immunology

There will be a follow up study in May/June. I’ve already expressed my interest in participation.

They are also preparing for opening of the Australia’s first specialised CFS/ME and Fibromyalgia Super GP Clinic.

For those who are not familiar with Australian Super GP Clinic , my understanding is that it is a large scale walk-in GP surgery with allied healthcare practitioners and medical investigation facility on site at the GP/healthcare shortage areas in Australia. Since Super Clinic has been used (and misused) as political tools, I keep the information minimum here.

Being the “specialised” clinic, I assume they will operate the clinic differently from the other GP Super Clinics.

One of the NCNED’s clinicians is Co-Director of NCNED and another clinician (and the university’s lecturer) has accompanied the severe ME/CFS research home visit, I’m quite sure that doctors at the specialised super clinic will be equipped with up-to-date knowledge about ME/CFS and Fibromyalgia.

I personally look at the opening of the specialised clinic be the final nail on the coffin for Gold Coast doctors from telling each other “ME/CFS doesn’t exist”. It will also stop harming sufferers from forcing wrong and harmful treatments.

Out of desperation, I asked NCNED if they would provide the information on severe ME to my government funded community care service provider. I thought they would take it serious if the information comes from a credible institution like Griffith University Medical School.

To my astonishment, they prepared an excellent letter that academically and medically explained severe ME/CFS with the mention of I fit both CDC Clinical Diagnosis Criteria and International Consensus Criteria for ME . On top of  the great explanation about severe ME/CFS, they included my data based on the record from severe ME/CFS research to make the point of my case. They clearly explained my sufferings, severity, fatigue level, disability level, and support needs by using Dr Bell’s ME/CFS severity scale , FSS score , Karnofsky Performance Scale and their research findings on abnormal immune function that clearly fit their immunological assessment of this illness.

This letter was much more than I expected. It was the first letter I ever had to have my medical condition explained accurately and effectively.

It gave me great confidence in NCNED that they are capable to improve health and life of people with ME/CFS. I share this personal experience here because I personally believe similar supporting letter will be available to other patients once the specialised clinic opens.

They demonstrated their compassion in the relating corresponding. I was humble and full of hope. I cried with gratitude.

I shared the letter with my treating doctor because I believe it will be very helpful if I need a treating doctor’s report in the future.

I haven’t received any acknowledgement of receiving the letter from my community care service provider, which is typical. At least, it seems they will continue to give me the desperate support I need (with less stress/trauma) at the moment. *touch wood*

I hope this information could give the similar hope I received from NCNED to other desperate pwME/CFS.

If you want more information about NCNED’s research and/or the specialised clinic, you can find their contact email or telephone number at Griffith University and Facebook website. Just click the link I listed below.

Disclaimer:

Just in case you are wondering, I have no connection nor involvement with NCNED except for the participation in their research according to their code of ethical practice. Their compassion and support are open to anybody who’s life is affected by this illness as long as they can provide the help you need.

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List of links

National Centre for Neuroimmunology and Emerging Diseases (NCNED) | Griffith University

| Facebook

Analysis of the Relationship between Immune Dysfunction and Symptom Severity in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) | Journal of Clinical & Cellular Immunology

About the GP Super Clinics | The Department of Health, Australia

Community Care Program | Queensland Government

Myalgic Encephalomyelitis: International Consensus Criteria | Wiley Online Library

Dr Bell’s CFS Ability Scale – a rough measure of how disabled you are | Dr Myhill.co.uk

FSS Score | Academic Concepts

Performance status | Wikipedia

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