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I have always had much more fatigue-ability with above the shoulder movement than I have with legs and walking. Very odd really. Interesting to see what other people say. Lifting anything remotely heavy is a PEM time bomb.

Dear God. Is that the best the Mayo Clinic can come up with after 4 years of Long COVID. A non scientific study advancing the Central Sensitization theory that is now becoming a cult. Barbra Bruce should just stick to pain catastrophizing.

I briefly spoke to him and from what I remember he felt a little better on cold baths and a few other more specific things but I don’t remember him saying he was cured but it was a long long time ago and I can’t be sure.

This is very interesting nugget that has been uncovered. So many people try this strategy of a different surrounding might positively effect their ME and it rarely does anything. Barry Sheene did this moving to Queensland and it did nothing for his physical state. You have to wonder if people...

This happened to me many years ago and I still got PEM but something had clearly shifted in a positive direction. Unfortunately it was a transitory moment as I relapsed back to where I was before. Nothing had changed in my life to cause the better and then worse health. Pretty frustrating all round.

“A FM/CFS state can be experimentally induced in health individuals with sleep restriction and exercise cessation” Quite unbelievable some of the stuff said in this study. Daniel Clauw seems to have little grasp of the concept of Me/cfs and keeps pushing the central sensitization barrow.

Funny how people know you have ME/CFS but they give you alcohol as a present.

A good discussion. Surely there has to be something in that as i don’t really know of another disorder where alcohol makes you feel shocking. I like the taste with food but about an hour later I feel like I’ve downed a few Periactin tablets. If I have more than a tiny amount I feel poisoned for...

I would probably be the perfect candidate for this study being in the area but I am not sure I trust them to use the data to not green light “rehabilitation programs” for us patients. I’m ok with doing the test and falling over afterwards if I think it would benefit science but after reading...

It was a metabolic study run by Melbourne university. To be in the study you had to have primary mood or anxiety ruled out. That is why Ranjit was involved.

Hi Matth. I was in an unblinded 5 month study of many of those supplements listed. In reasonably high doses and there was no long term benefit. No specialists who I know recommend them. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370610

Thanks for the effort. The RACGP commissioned this guy and his daughter to review current evidence base for cbt and graded exercise for cfs in 2013. The review is still on their website but I doubt they will stoop so low to tout The lightening Process...

Interesting that Andrew Lloyds clinic website still promotes “Strong or Level 1 evidence”. You would have to wonder if he is still involved heavily with this update as he uses the same language when interviewed. Clearly evidence of improvement with GET does not exist.

A very long nightmare. I do not know why they keep this up. It is just watered down rehash that has no evidence base. The past comment of racgp being invested in nice guideline has clearly gone out the window. Does anyone know if this is a temporary measure for a clinical evidence update coming...

“I've had ME for 11 years and have almost constant flu-like symptoms. I have a question about the immune system. So, like many, my bloodwork is normal. Normal WBC, CRP and ESR are close to zero, everything else normal. I don't believe I have any persistent virus that my body is trying to fight...

I had Suvorexant (Australia) which is a similar orexin antagonist and unfortunately it did not do anything for sleep. Hopefully you have a better outcome with Daridorexant.

Good point. The studies that I can remember of Australians with me/cfs point to 1/500 (50,000) incidence. It worries me the last few years that emerge keep quoting that 250,000 figure.

So depressing that Dr Norman Swan keeps parroting Andrew Lloyd’s BS. Does not even have the decency to read the Pace trial himself and look at the raw data. He has interviewed Sharpe, White Wessely and Lloyd multiple times over the years and never had a patient or specialist on who deals with...

I find Andrew Lloyd a completely perplexing person with his views on me/cfs. He is ok with putting his name on this study but has a thoroughly contrasting view in the interview below when explaining about psychosocial or vulnerability not being factors in the developments of me/cfs. He is...

I saw that yesterday and my heart sunk. Dr. Schloeffel sells homeopathy at his clinic and dabbles in Lyme disease based on overseas blood tests. His methods are complete pseudoscience. Anne wilson compared me/cfs with adrenal fatigue in her first email as ceo. I fear all the good work done by Dr...