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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Search results
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Naive question - what to do during the crash?
Thanks Wishful, I did go to my GP just for normal blood tests and nothing was found - although I accept that part of the problem with ME is that infections if they are relevant to ME don't show up in normal blood screening. I take your point about having to follow what is "normal" for each person- deuce
- Post #9
- Forum: General ME/CFS Discussion
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Naive question - what to do during the crash?
Yes friends like this are worth their weight. It's a very good strategy you have adopted Moof. I am guessing you've had a lot of experience having such a long stretch on the ME journey.- deuce
- Post #5
- Forum: General ME/CFS Discussion
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Naive question - what to do during the crash?
Thank you Moof. I appreciate your support:) I guess I also wondered whether doing nothing but staying in bed and having no stimulus for a few days is required or whether it's just pointless and simply waiting it out as you noted is the only answer?- deuce
- Post #3
- Forum: General ME/CFS Discussion
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Naive question - what to do during the crash?
Hi all. I'm not new to ME/CFS (26 years ago diagnosed) but I mostly had a routine for toughing out a crash with pretty much lying in bed for a couple of days and getting good sleep. Now I'm in a new ME/CFS experience and I am hoping for a bit of wisdom if you could offer me. By way of...- deuce
- Thread
- Replies: 9
- Forum: General ME/CFS Discussion
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Me/cfs doctors in Sydney, Australia
Thanks Hotch I appreciate your response. Well my story goes like this: Im 44 now. I first noticed problems at 18 so that makes me 26 years into CFS. I can exactly recall the problem. During my final exams at school I stupidly crammed for about 3 weeks of study by adopting a naive tactic of...- deuce
- Post #25
- Forum: ME/CFS Doctors
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Me/cfs doctors in Sydney, Australia
This is an old thread I'm digging up in the hope anybody may have an opinion on Dr Donohoe? I'd like to consider seeing him but hoping for any feedback- deuce
- Post #23
- Forum: ME/CFS Doctors
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MAF 878 Available - Anyone already using it?
I see - then I guess the question is whether anybody reports any benefits with it here of late. I started on MAF878 powder a few years ago but gave up. Probably didn't give it enough of a go and am intrigued as to whether its worthwhile pursuing again. I go through phases of accepting that... -
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MAF 878 Available - Anyone already using it?
Does anybody still use MAF - either probiotic or otherwise? I realise Dr Endlander responded here in May, and I take it therefore that he prescribes it. I just don't seem to see much discussion about it anymore and wondered if it fell out of fashion - ie didn't work for people or whether it... -
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Appt With Enlander
I know this has been covered but now that we're in May 2016 is Dr Enlander still available? I tried emailing a few times using the email they used to correspond with me on and the email address bounces back. I tried calling and nobody answered the phone. Can anybody advise me? -
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GCMAF Questions
i really look forward to hearing more Dr Enlander. I'd love to know of your findings form the conference of the differences between 878 yoghurt and Gc MAF Cheers -
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MAF 878 Available - Anyone already using it?
Hey Suzanne or others Any news to report on the MAF878? I've been taking it for about 1month now and notice no real benefits yet. Did notice at 75mls it was too strong and I felt tired, exhausted and a bit fluish. Reduced it to about 25mls and its easier to take. Wish I could report benefits... -
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MAF 878 Available - Anyone already using it?
Thanks Suzanne, your response was really interesting. It sounds like you've really been on a journey. I wish you all the success you can find to get better. GcMAF australia, thanks for your explanation of the herx being more apparent in ME patients. That's what I expected might be the case... -
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MAF 878 Available - Anyone already using it?
Actually I have a question - if normal people (that is to say non ME/CFS sufferers) were to take MAF's, would they also feel very ill and knocked about by them? I guess my question is really asking, does the fact that the MAF's create some terrible ill feelings when we take them demonstrate... -
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MAF 878 Available - Anyone already using it?
Hello GcMAFAust. I am sure you're right about some practitioners in oz using MAFs. I was diagnosed with what was then called CFS about 20 years ago from what was apparently one of the experts in Oz. At the time, the doctor/expert who diagnosed me advised there was nothing that could be done... -
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MAF 878 Available - Anyone already using it?
Hello ukxmrv - I didn't discuss IRIS with Dr Enlander. I wasn't aware of it till I started reading this forum. I am sure that you have very valuable experience with MAF products and so I take your point that the dosage level where it causes ill feeling hasn't resulted in any therapeutic... -
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MAF 878 Available - Anyone already using it?
Hi Suzanne and hello everyone else here for that matter as it's my first post here:) I had two skype consultations with Dr Enlander and then his staff sent the MAF878 and vitamin sups via post to me here in Sydney. It arrived safe and sound as a dry powder and I bought the other ingredients to...