Solve webinar 17 March: Dr Susan Levine - “The Future of ME/CFS”

[duncan]

Interesting that she seems to echo Dr. Enlander's concerns about the potential toxicity of Rituximab.

She also gets a big Plus from me for mentioning she'd refer some Lyme patients to Liegner.

 

[BurnA]

Interesting that she seems to echo Dr. Enlander's concerns about the potential toxicity of Rituximab.

I find it strange rather than interesting.

The problem is if a doctor comments on something that they don't know much about then I begin to question everything they say.

Remember Fluge and Mella didn't report any serious side effects if their trials, so where is all this safety concern coming from.

 

[Kati]

I find it strange rather than interesting.

The problem is if a doctor comments on something that they don't know much about then I begin to question everything they say.

Remember Fluge and Mella didn't report any serious side effects if their trials, so where is all this safety concern coming from.

i think that the lack of knowledge and worry that chemotherapy means 'hard drug' or toxic drug is at play here. Targeted therapy that is Rituximab is a beautiful thing because it doesn't affect non-targeted cells, unlike other chemotherapies for cancer which affects fast reproducting cells and give patients all kinds of symptoms and toxicities.

Then drs get worried about the drug reaction during infusion which is experienced by 75% of those getting it for the first time(my estimation from my experience as a RN) and that resolve by giving Benadryl and hydrocortisone. And in 99% of the cases the infusion can be resumed and completed.

What is important is that the infusion needs to be given in or near a hospital setting and by experienced staff who knows what to do in case of a reaction.

Lastly, it is my opinion that a life-changing disease which strips patients of their dignity, of their work and themselves deserve appropriate treatments, diagnostics research that commensurate burden of disease and access to clinical trial using drugs that have the necessary power to knock the disease down. I feel strongly about that. It may not be everyone's cup of tea but it is mine.

 

[BurnA]

Lastly, it is my opinion that a life-changing disease which strips patients of their dignity, of their work and themselves deserve appropriate treatments, diagnostics research that commensurate burden of disease and access to clinical trial using drugs that has the necessary power to knock the disease down. I feel strongly about that. It may not be everyone's cup of tea but it is mine.

Yes even if rtx was as bad as some people seem to be making out, do they not realise how bad this disease is ? This drug is approved for cancer and RA so why is there such concern for ME?

 

[leela]

why is there such concern for ME?

Oh, the irony...

 

[alex3619]

Yes even if rtx was as bad as some people seem to be making out, do they not realise how bad this disease is ? This drug is approved for cancer and RA so why is there such concern for ME?

My understanding is that most of the side effects, in most cases, of Rituximab, are associations or about Rituximab in combination with other drugs. ME patients may be on other drugs but they are different to cancer patients for the most part. Its not clear what impact Rituximab has that is due to the drug by itself. I guess the biggest risk is if the patient gets a life threatening infection while their adaptive immune system is down.

 

[justy]

How do you rule out chronic lyme?

- she does thorough assessment.
- chronic Lyme have deeper neurological component, joint swelling, tingling and numbness.

I have a clinical dx of Lyme and yes I have a large neurological component, some joint swelling/pain and tingling and numbness. However my ME doc describes the Lyme and co as having caused my ME.

Can one have autoimmune disease and still have Me/cfs and how to differentiate?

- tough question.
- Joint pain/swelling, other symptoms like cold sore hair loss, Raynauds, RF, lupus ANA would differentiate.

Yes, again I have joint pain/swelling, hair loss, ulcers in mouth and nose and a positive ANA - Lupus was ruled out.

- had only 1 person with IgM+

IGM + for what? or just a raised IGM? I have a persistently raised IGM.

Thanks for the run down on what was said.

 

[Sasha]

Dr Levine has kindly provided answers to questions that she didn't get time to answer in her talk:

http://solvecfs.org/dr-susan-levine-part1