Have you heard about Dr Paul Hwang and ME/CFS? As someone with Severe Myalgic Encephalomyelitis I try to keep as up-to-date as I can with news so reading about Dr Paul Hwang and his recent PNAS paper I felt a little bit of hope. I know that many will disagree with me on this matter but I feel passionately that any Dr making noise about Myalgic Encephalomyelitis is a good thing. After all, we do not know who will read the research or who will show an interest based on what Dr Whang is looking into.
Living with Myalgic Encephalomyelitis since 2012 my life has been destroyed by this illness yet other than my own GP and Drs when I was admitted into the hospital I have not seen a ME specialist for a very long time. This is not uncommon, many patients are diagnosed and then referred back to your own GP for management of your illness. In some cases, I have heard about ME patients who have been diagnosed by their own GP and have the whole of the illness managed by their GP.
I know that I have been incredibly lucky to have had my illness diagnosed by ME specialists and then with the help of many Drs over the years I have a way of managing my illness. I am not pain-free by any means but I have incredibly powerful medication which I take every day at the same time as well as medication that I can take on top of my regular medication to manage my pain levels when they get too difficult to manage.
I also have many ways that I can help myself, I have a TENS Machine which can be put on quickly, and I also find aromatherapy can help as well as using Epsom salt in a warm bath for twenty minutes. I am not saying that any of this is a miracle but using Lemongrass oil and Lavender Oil in a diffuser does relax me, this is also something I do when my Hubby comes home with a cough or cold due to the antibacterial properties in the oils. I use Lemongrass essential oil a lot even inhaling it directly to stop me from vomiting when feeling nauseous, Lemongrass also has antibacterial and anti-inflammatory properties. Lavender oil can be found in many different products today including sleep sprays as it is known as an oil that helps aid relaxation many sources also state that Lavender can help anxiety and depression.
Using essential oils worked for me when I was taking driving lessons as I would get extremely anxious, this was probably my fault as many of my driving lessons picked me up from work making bad days even worse on many occasions. My advice if you are trying essential oils for the first time do as much research as possible and when buying essential oils always buy pure therapeutic grade A. You will find places that sell oils mixed with a carrier oil for massage but it would not work effectively for a diffuser, you will find some places that dilute oils or that the quality is extremely poor so please be aware of this. Some oils you cannot apply directly to your skin so you do need to research before spending any money.
People with Myalgic Encephalomyelitis suffer from extreme fatigue, I suffer so badly that I can not put one foot in front of the other no matter how much I want to, Dr Whang has been looking into a protein WASF3 which could be interfering with our ability to convert oxygen and glucose into energy. I can drink 900ml of Orange Lucozade which is an energy drink or very strong coffee and fall asleep so I know something is wrong with me. Dr Whang was originally looking into the regulation of Mitochondria (which always makes me think of Star Wars) by the mutated TP53 gene. Originally Dr Whang was looking into LFS which causes a type of early-onset cancer disorder. Lots of this goes over my head so bear with me.
In the article, Dr Whang states that his finding was a prepared accident which has thankfully led Dr Whang to study its role in ME/CFS. Dr Whang finishes the article being asked if he would like to say anything to readers of this article suffering from ME/CFS,
“Dr Whang says In our lab we are working on our finding the best that we can realising that treatment is a priority”
https://medicalnewsbulletin.com/ask-the-expert-the-me-cfs-mystery/
Right now Dr Whang has worked with a very small sample size so I am hoping that in the future that this will change. I have to say that any Dr looking into Myalgic Encephalomyelitis is a good thing. I can only hope that more Drs will see research like this and want to get involved. Maybe one day soon research like this will be used in lectures for medical students as right now ME isn’t even discussed leading to many Drs not knowing anything about Myalgic Encephalomyelitis. It still baffles me that an illness which affects millions of people around the world isn’t talked about and researched more.
How can it be that in 2023 you can qualify as a Dr without knowing about an illness millions of patients around the world suffer from, leaving millions of sufferers around the world without the help and support that they need. Something has to change and soon.
I wanted to take a quick moment to say thank you all so much for your support on my New YouTube channel. I know trying to upload a new video every day is a huge task for someone with Myalgic Encephalomyelitis but I have a lot of people here to help me. Yes, I know that I am a little behind but with this illness having the house decorated and Christmas only a week away my home is a little crazy right now. I am so touched by every message you send me or every comment on my videos or social media pages, life with this illness can be so lonely and I hope that we can look to start building a very special community in the near future. So thank you again 🫶🫶.
If you haven seen my channel yet here is a link to the video where I talk about my life with ME 🫶