Comments for ME Australia

Comment on Privacy Policy by Samantha

Samantha — Sat, 06 Feb 2021 16:10:50 +0000

I have been astonished at the level of ignorance and lack of well educated GPs or specialists on ME/CFS and its difference from fibromyalgia and other fatigue symptoms. I can not find any clinic here in Melbourne that can run a CPET or advise heart rate monitoring / evidence based pacing. If anyone has a doctor who understands ME/CFS please let me know. I heard CFS discovery was good but it is now closed.

Comment on Remembering Alison Hunter 1976 – 1996 by Sammy

Sammy — Sat, 06 Feb 2021 10:15:02 +0000

I wish that more Behcets advocates knew of this story because I was also diagnosed with CFS before Behcets and its a very common experience. This story is not just an illustration of the horrible stigma around ME it also illustrates just how much that stigma leads to misdiagnosis and loss of potentially life saving medication to those with many other fatigue inducing rare diseases.

Comment on Australia: 2 in 5 chronic fatigue syndrome diagnoses wrong, worse for ME by Meet the Scientists: Dr Kiran Thapaliya – ME Australia

Meet the Scientists: Dr Kiran Thapaliya – ME Australia — Sun, 08 Nov 2020 22:20:01 +0000

[…] chronic fatigue syndrome is a broader definition than the International Consensus Criteria for ME: NCNED found around 62% of Australians diagnosed with chronic fatigue syndrome met the Fukuda criteria, 32% met […]

Comment on Meet the Scientists: Dr Ashish Sethi by Laurence Fang

Laurence Fang — Sun, 01 Nov 2020 10:00:21 +0000

In reply to Laurence Fang.

“any” correction.

Does not require any medications

Comment on Meet the Scientists: Dr Ashish Sethi by Laurence Fang

Laurence Fang — Sun, 01 Nov 2020 07:30:31 +0000

In reply to Kathy Collett.

I am a Researcher and an Inventor focussed on practical therapies which are non invasive and does not require and medications. This modality is based on altering the gut microbiota with light energy from Lasers and LED’s. In one case study of a person afflicted with ME/CFS, who had been ill since the 1990’s, altering his gut bacteria with the infra red LED therapy device , led to an improvement in his ME. Symptoms within a period of 10 weeks of daily use. It was a chance discovery , he started his therapy in September 2019. Initially it was to help him through his bout of flu, depression , lack of energy, sleeping without feeling that he had been asleep …..and a year on, November 2020, he is still doing well without any relapses.

I would be interested in partnering a person or organisation, who has the facilities and knowledge to further this research on my hypothesis that the Gut Microbiome /brain axis has influences on the immune system’s responses in relation to causing ME.

My evidences are real, and the subject may be interviewed. I have his testimonials, and I have videos, showing the transformation. He is still very well a year on from his recovery and is at present writing up his experiences.

I shall look forward to interested parties who could contact me :-

[email protected]

Laurence Fang

Researcher, inventor of Laser and LED devices.

Comment on Government advisor calls for more biopsychosocial research into ‘ME/CFS’ by Jen

Jen — Fri, 30 Oct 2020 17:52:14 +0000

It should be labelled as the psychosocial approach as there is no “bio” as the BPS studies only use wholly subjective measurements and trials are open to bias. There is no objective “bio” measurements used in any psycho-social studies. These are often dropped midway as they are shown to be not proving the deconditioning theory, but disproving it. In the case of BPS PACE trial they even changed outcome measurements half way through so you could be sick enough to enter the trial *get worse* and then still meet criteria for recovery. This kind of flawed research just muddies the waters and should be rejected or the whole scientific method becomes redundant.

There is no biomedical research to support the deconditioning model, in fact the biomedical research shows clearly that there’s is a distinct energy fault called PENE (post Exertional neuroimmune exhaustion). This can be physically tested for with a 2 day repeat Cardiopulmonary exercise test (CPET), metabolic testing and excessive lactate levels. Those biomedical studies show that exercise therapy often used in the defunct “deconditioning model” is in actual fact harmful to patients with PENE. PENE is not “fatigue” it’s not deconditioning. It’s physiologicaly different and has its own unique pathophysiology. The cardinal symptom of ME is not fatigue it’s PENE. Anyone still denying this in 2020 with the overwhelming biomedical scientific findings is living in la-la land. Several scientists are working on biomarkers as the CPET test itself is harmful to patients.

The science has moved on. Why these psychosocial psuedoscientists are still clinging on to a defunct theory is beyond me. Enough money has been spent on this field, especially in the UK to show it’s a null route. The BPS research has done nothing to help patients, in fact it’s harmed thousands and has stunted biomedical research for nearly 3 decades. What would be helpful is investing research into biomarkers so treatments can be objectively tested.

Comment on Meet the Scientists: Dr Kiran Thapaliya by Rachel Makepeace

Rachel Makepeace — Thu, 29 Oct 2020 04:26:07 +0000

I look forward to seeing the follow up study with ICC. With that, I’m also curious to see comparison between Fukuda and ICC results.

Comment on Failure to update medical guidelines see people with ME denied disability support by Jadie Le Breton

Jadie Le Breton — Thu, 29 Oct 2020 00:06:12 +0000

I have had ME/CFS for 30 years it’s never going away you definitely need to approach it with positive attitude I went from total shut down two heart attacks commando crawls to the bathroom couldn’t even drink water without choking they told me there was nothing they could do to stop it I was going to die. So I found my own way to manage. I’m 58 I’m a nurse in age care I found laughing helps enormously as it give me endorphins witch help cope with the pain and fatigue and I can’t do medication as the chemical make up affects my body and shuts me down the more natural the better and yes the pain and cotton ball brain is always there and 80% of the time I can’t eat food as it makes me sick have to eat simple salads and water baist foods are the easiest to digest least side effects. I need to retire please sort this shit out I’ve suffered long enough with this so called imaginable disease I push so hard to be normal just to have a life.

Your in pain
Jadie Le Breton
Menai NSW
Australia

Comment on Meet the Scientists: Dr Ashish Sethi by Kathy Collett

Kathy Collett — Tue, 27 Oct 2020 07:08:19 +0000

Lovely to have someone so enthusiastic and interested in ME research.

Comment on 2020 Mason Foundation funding round now open by Kathy Collett

Kathy Collett — Thu, 22 Oct 2020 10:22:40 +0000

Great there are more opportunities available for ME funding and hopefully it will attract more researchers to study the illness.