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    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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wdb

Senior Member
Messages
1,392
Location
London
Where did you hear about it ? The only Google result I get is this thread.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
That's feels serendipitous that this should pop up again. I'm starting IVIG soon and was searching for IVIG in ME and came across this guy a few days ago and now here he is again.

I note that he advocates a pure diet, good sleep hygiene and:

Strict control of exercise and activities.
No heavy lifting (anything using upper extremities – such as house cleaning) is prohibited.
Walking is allowed if patient improves.
If the patient feels any post-exertional malaise, then reduce the exercise.

sorry the above should be in quotes, but my quotes button has gone walk about.

I also like their definition of rest:

How to have rest
Rest (like monks meditate),
No loud music and no reading books.
In acute stages, absolutely no exercise.
If anyone does exercise they may develop cardiomyopathy or severe cardiac arrhythmia - even death.

They only give 1G a week, whereas I will be having 10g one day a month - I think even 10g is still not a lot. I think for CVID etc they give about 30g.
 

South

Senior Member
Messages
466
Location
Southeastern United States
The gist of it is intravenous IGG, complete avoidance of exercise during the program (see Justy's post for more detail on the exercise) and a diet of only rice, vegetables, and high protein: specifically meat and fish (but no pork). He lists many common foods to avoid during the program. Very plain diet, but including high protein.

Of course, the intravenous IGG is the part that is impossible to get for ordinary people with no access to decent doctors.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
... but my quotes button has gone walk about
@justy, you're not the only one who thought that!

I also thought the quote option was simply gone before I saw the thread that Sushi posted about above.

I had even started typing in the tags manually, e.g. [ quote ] and [ / quote ] but without the spaces. :oops:
 

Prefect

Senior Member
Messages
307
Location
Canada
How is it CFS only has a 5-10% recovery rate, and yet so many of these "experts" cure of 90% of their patients?

Or am I just bad at math?