Health knowledge made personal

Rachel M. Patient Expert

~ Japanese Australian living in South East Queensland, Australia. ~ Living with severe/moderate ME/CFS. Wheelchair user.  ~ Human Mum to a Fox Terrier.  
› Share page:

Posts

Sort by: Most recent | Name
Appointment with Gastroenterologist by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome I had a productive appointment with a Gastroenterologist. My treating doctor briefly explained to me that this specialist is interested in connection between ME ... Read on »
Accepting the Reality… by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Accepting the reality… Although, it feels more like surrendering to the reality. The reality of living with severe ME… I honestly thought it is not that bad… I ... Read on »
ME Awareness Week & NCNED by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome 12 May is International ME/CFS Awareness Day, therefore the week between 11 May and 17 May is ME/CFS Awareness Week.     To be honest, I became r ... Read on »
Thoughts by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome I wonder what will happen when I can no longer look after Basil… I fear that the time is getting near. My ME is progressing or my body is not recover ... Read on »
My Personal Update of Severe ME/CFS Research by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome 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 ... Read on »
Thoughts on Rude and Arrogant People by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Just my thoughts about Rude and Arrogant People. I hope I’m not No 4. I need to stay away from rude and arrogant people. I just don’t have energy to b ... Read on »
Visit from NCNED Severe ME/CFS Research Team by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Last week, I had a visit from Severe ME/CFS Research team at The National Centre for Neuroimmunology and Emerging Diseases (NCNED). For those who are not famil ... Read on »
Yellow Rose by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome The other day, I noticed yellow in front gardenia bush. When looked closer, I was delighted to see a beautiful yellow rose. Its stem was skinny and viny, so couldn’ ... Read on »
Life Must Go On by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome After the previous post/rant, the situation kept on “borderline trauma”. I crashed a couple of times because of the stress, and the stress made my ME/CFS exacerbate ... Read on »
Rant by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Yes, this is another rant. It needs to get out from my system. It is really hard to cope when I have nobody to talk to in person. So, you probably don’t want to ... Read on »
New ME/CFS Study – Volunteers Needed by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome National Centre for Neuroimmunology and Emerging Diseases (NCNED) on the Gold Coast, Queensland, Australia is looking for participants for the next ME/CFS biomedica ... Read on »
“Life” is Possible Again by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome The distressful situation in last year made me feel I couldn’t keep going anymore. Now that I have a knowledgeable treating GP & ME/CFS specialist and Anglicare ... Read on »
Appointment While Collapsed & POTS Diagnosis by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Note: This is my personal account on the occasion. It is possible that my understandings or impression were wrong. Please don’t make judgement based on this post. ... Read on »
Transport Stress by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome On the medical appointment day, I was a little shocked to see the driver arrived with a van/mini bus, not a passenger car. Since the first two transport support ... Read on »
Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome I personally believe that a patient should try to be an expert of his/her own illness. Having said that, I found it is a real challenge with  ME/CFS. Unlike ... Read on »
Tilt Table Test by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Note: This is my personal account on the occasion. It is possible that my understandings or impression were wrong. Please don’t make judgement based on this post. ... Read on »
Cardiologist Appointment by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Note: This is my personal account on the occasion. It is possible that my understandings or impression were wrong. Please don’t make judgement based on this post. ... Read on »
Transport Support by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome Since the last medical appointment, I’m receiving outing/errands assistant from Anglicare. It has reduced my stress level significantly. When I’m not well enough to ... Read on »
Alison Hunter Memorial Foundation (AHMF) Flow Cytometer Appeal by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome My local fellow MEite, Sarah shared a very interesting information that Dr Don Staines’ medical hypothesis of CFS as Vasoactive Neuropeptides Autoimmunity could be ... Read on »
Follow Up Appointment & DHEA by Rachel M. Patient Expert Posted in: Blog Posts in Chronic Fatigue Syndrome I received a phone call from a friendly nurse from ME Specialist’s clinic that Dr GD wants to discuss about the blood test result with me. She understood my difficu ... Read on »