6 ms·

Fred Friedberg's protocol pushed a friend of mine into Severe ME and that person spent years in a nursing home as a result. At this point we know enough about R

Fred Friedberg's protocol pushed a friend of mine into Severe ME and that person spent years in a nursing home as a result. At this point we know enough about Ramsay's observations on muscle fatiguability to know that anything involving exercise is absolutely contraindicated in this illness. What you are doing is irresponsible and dangerous. ME patients cannot tolerate exercise. Period, end of story.

cpncrunch 8y ago
What, specifically, did your friend do?
- mindgonehaywire 8y ago
  What this person did, specifically, was listen to someone like you, and went out to Stony Brook, & FF and his protocol ruined what was left of this person's life. Instead of going to see an ME-knowledgeable doctor who possessed an understanding of what Melvin Ramsay had discovered decades earlier. You and your misinformation are dangerous, and it's not like you haven't been told, but you don't care. It's really too bad you can't held accountable for the damage you do.
  - quickthrower2 8y ago
    I'd like to know more. Does this accurately reflect the protocol your friend had to follow: http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%252580%252599s-seven-step-protocol-treating-cfs-fm http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%2... Or was there something extra, you mention exercise in your other comment for example which isn't mentioned in the article above. I don't have access to the original journal.
adinb 8y ago
Which makes sense in light of the recent research implying crippled metabolomics in mitochondria (altered/less efficient ATP production chain)
- cpncrunch 8y ago
  No, recent studies have debunked Myhill's claims. See for example the Tomas et al review I posted in another comment here.
  - adinb 8y ago
    Not going off of Myhill at all. More talking with Dr. Klimas and most of the important ME papers in the last year.
    - cpncrunch 8y ago
      Link to a review that contradicts Tomas?
      - adinb 8y ago
        I'm not sure exactly which point you're shooting for, my point is more about the provable altered metabolomics discovered over the past year and a half by Dr. Ian Lipkin, et al. Example paper from this summer:: https://www.nature.com/articles/s41598-018-28477-9 https://www.nature.com/articles/s41598-018-28477-9
        cpncrunch 8y ago
        It looks like that article you quote is referencing "Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients". However if you look at Tomas' study, they were not able to replicate that study: "Contrary to previous literature [15, 28] which suggested that abnormalities in PBMC ATP levels may be caused by glycolysis, results from the glycolysis stress test showed that glycolysis in CFS patients does not differ significantly from that of the non-disease cohort. " So you need to be careful that the studies you're looking at have actually been replicated. In this case it wasn't replicated.

cpncrunch 8y ago

What, specifically, did your friend do?

mindgonehaywire 8y ago
What this person did, specifically, was listen to someone like you, and went out to Stony Brook, & FF and his protocol ruined what was left of this person's life. Instead of going to see an ME-knowledgeable doctor who possessed an understanding of what Melvin Ramsay had discovered decades earlier. You and your misinformation are dangerous, and it's not like you haven't been told, but you don't care. It's really too bad you can't held accountable for the damage you do.
- quickthrower2 8y ago
  I'd like to know more. Does this accurately reflect the protocol your friend had to follow: http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%252580%252599s-seven-step-protocol-treating-cfs-fm http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%2... Or was there something extra, you mention exercise in your other comment for example which isn't mentioned in the article above. I don't have access to the original journal.

adinb 8y ago

Which makes sense in light of the recent research implying crippled metabolomics in mitochondria (altered/less efficient ATP production chain)

cpncrunch 8y ago
No, recent studies have debunked Myhill's claims. See for example the Tomas et al review I posted in another comment here.
- adinb 8y ago
  Not going off of Myhill at all. More talking with Dr. Klimas and most of the important ME papers in the last year.
  - cpncrunch 8y ago
    Link to a review that contradicts Tomas?
    - adinb 8y ago
      I'm not sure exactly which point you're shooting for, my point is more about the provable altered metabolomics discovered over the past year and a half by Dr. Ian Lipkin, et al. Example paper from this summer:: https://www.nature.com/articles/s41598-018-28477-9 https://www.nature.com/articles/s41598-018-28477-9
      - cpncrunch 8y ago
        It looks like that article you quote is referencing "Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients". However if you look at Tomas' study, they were not able to replicate that study: "Contrary to previous literature [15, 28] which suggested that abnormalities in PBMC ATP levels may be caused by glycolysis, results from the glycolysis stress test showed that glycolysis in CFS patients does not differ significantly from that of the non-disease cohort. " So you need to be careful that the studies you're looking at have actually been replicated. In this case it wasn't replicated.