• 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.

    To become a member, simply click the Register button at the top right.

Pathogens in cfs/me (kDM)

heapsreal

iherb 10% discount code OPA989,
Messages
10,099
Location
australia (brisbane)
http://www.me-ireland.com/diag/2.htm
Interesting link I'm guessing about 1to 2 yrs old? Discusses all the cfsme research on pathogens. A lot we have already read but the link keeps it all together. Unsure if it's been posted before.

What I found interesting but not sure if old was info from KDM, one link in the paragraph says 2001, but I wonder if still relevant.

Dr. De Meirleir has had great success with Ampligen combined with anti-viral and anti-pathogen treatments in his clinic in Belgium. Firstly, all of the infections were identified, including co-infections, through several intensive diagnostic tests. Then Ampligen was combined with specific anti-viral and anti-pathogen treatments. Treatment was given for several months and up to a year. The results were impressive, and patients recovered from ME . Dr. De Meirlier has stated that an eight-year follow-up of patients found that 92% had not relapsed. This is highly significant. This strongly indicates that Ampligen by itself may not be enough, but combining it with anti-viral and anti-pathogen treatments may bring about better improvement and a high probability of full recovey. This was reported in the AACFS Conference of 2001, click here to view paper. This must be put in context, the importance of having infectious and immune system dysfunction sub-groups identified through comprehensive testing.

Those numbers look interesting with 92% not relapsing eight yrs later. Doesn't say percentage of patients recovered though or defined recovery. Is KDM still treating patients like this now who can financially afford it??

The whole article seems to hint that pathogen testing most of us have available to them is very inaccurate. What are normal pathology labs not doing? Are they just not keeping up with technology?

Cheers!!!
 

msf

Senior Member
Messages
3,650
Wow, good find, thanks! I think you should change the title of the thread slightly though - some people may think that KDM wrote it, which doesn't seem to be the case.

I know you explain what you meant in the first post, but I think some people may miss that.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Prof M was offering Ampligin and my London doctor was talking to him around 2001 about offering it here.
Some went wrong in the relations I think around then between the European doctors who wanted to offer it and the company who makes Ampligin.

There were UK patients travelling to see KDM from London for Ampligin as well.
We even heard from one London doctor about costs and a research trial.

To get Ampligin then I was told to get an RnaseL test. The only pathogen I remember being mentioned was HHV6

Then it all went bad between the doctors and Hemphx (spelling? )
 
Last edited: