Is ME/CFS a overactive immunsystem?

[SWAlexander]

Reading a story from a cancer patient`s success, I wonder if PDL immunotherapy would work for ME/CFS.
What is PDL immunotherapy?
PDL1 is a protein that helps keep immune cells from attacking nonharmful cells in the body. Normally, the immune system fights foreign substances like viruses and bacteria, and not your own healthy cells. Some cancer cells have high amounts of PDL1.
What does PD-L1 stand for?
Programmed Death-Ligand 1 (PD-L1) is a protein that can be found on the surface of many cells throughout the body. Some, but not all, tumor cells have large amounts of PD-L1 that help the tumor cells evade the body's natural defense system—the immune system.
What is the difference between PD-L1 and PD-1?
PD-1 antibodies are IgG4, whereas the PD-L1 antibodies harbor unmodified (avelumab) or modified IgG1 Fc sequences (durvalumab and atezolizumab). In addition to PD-1, PD-L1 also binds CD80, a molecule which has an important role as a costimulatory ligand
https://www.nature.com/articles/s41598-019-47910-1
What type of immunotherapy is Keytruda?
KEYTRUDA is a type of immunotherapy that works by blocking the PD-1 pathway to help prevent cancer cells from hiding. KEYTRUDA helps the immune system do what it was meant to do: detect and fight cancer cells.
https://www.researchgate.net/public..._treatment_ameliorates_airway_hyperreactivity
However, Keytruda (generic drug pembrolizumab) is expensive in the US
Pembrolizumab is available in single-use vials of 100 mg and is administered at a dose of 200 mg every 3 weeks. The list price for pembrolizumab is $US4381 per 100-mg vial, therefore the cost per dose is $US8762

 

[Learner1]

Interesting thoughts @SWAlexander

Many of us have various types of immune dysfunction - immunodeficiencies, T cell exhaustion, autoimmunity, etc.

As my cancer treatment triggered my ME/CFS 7 years ago, I've straddled the ME/CFS and cancer worlds and I have a hematology oncologist as well due to my hemochromatosis.

As it became evident on the ME/CFS side that my immune system was dysfunctional - both immunodeficiency my and autoimmunity, I've pressed the cancer world for more answers and asked if there's anything to kick my immune system into gear. Al the cancer people seem to care about is imaging to find tumors and then treating anything they find - at 3 major cancer centers on 2 coasts.

What I have learned from other patients is that Keytruda doesn't work for everyone.

http://www.pmlive.com/pharma_news/f...line_bladder_cancer_1341996?SQ_DESIGN_NAME=2&

https://www.clinicaltrialsarena.com...-keytruda-for-lung-cancer-amid-fda-crackdown/

https://www.evaluate.com/node/15442/amp

There are various immunotherapies currently on the market, with mixed success rates. When they are successful, it's like a miracle. However, I knew patients who tried them and they either didn't work, or they backfired, with the immune system running smock and quickly killing the patient.

Success seems to depend on the exact cancer and the unique state of each patient's immune system, which must be carefully tested. Recognizing the deficiencies of current tools, more strategies are in the works to get around the barriers found with the current toolset.

As one who has benefited from Rituximab for my autoimmune issues, it is not without it's downsides either. Other MRE/CFs patients have benefited from a leukemia drug, imatinib, for mast cell activation issues.

It is probably prudent to work with a talented Immunologist (better an HIV doctor than an allergist) who can thoroughly test ones immune system, find and treat any infections and reach out to immuno-oncologists as needed.

Then figure out how to pay for it, as anything down this pathway is likely to be viewed as highly experimental with one's insurance provider.

 

[SWAlexander]

Learner1. It is a sad road ahead.
As you say, it is the payment and what the insurance (Medicare) will authorize or not.
Now, being back in Germany after 28 years in the USA, I found the insurance here will pay for almost all tests and meds, but I can´t find an (educated) specialist.

 

[Wishful]

I doubt that ME is simply an overactive immune system. Some of us have strong immune systems and some have weak immune systems. To make it even less clear, which immune system? We have several separate immune systems that interact to some degree, so you might have one system overactive while the others are underactive.

Keytruda sounds like a drug with a very specific target. If you don't know which immune system is dysfunctional in what way, you might as well choose a drug by random choice. If it was a very safe, cheap and easy to obtain drug, it might be worth an experiment, but otherwise, I'd rate it as a very very low chance of working for ME.

 

[heapsreal]

Low nk function being the main finding in cfsme. But maybe other parts of the immune system are overactive to compensate for the parts of the immune system that are under functioning. At a guess id say overall its an underfunction immune system for many cfsme people.

 

[GlassCannonLife]

Low nk function being the main finding in cfsme. But maybe other parts of the immune system are overactive to compensate for the parts of the immune system that are under functioning. At a guess id say overall its an underfunction immune system for many cfsme people.

Have you had your nk cell function tested? I'm also in Aus so was wondering if we had any good places to get these types of exotic tests done through.

 

[heapsreal]

Have you had your nk cell function tested? I'm also in Aus so was wondering if we had any good places to get these types of exotic tests done through.

I had it 4 times every 6 months about 10yrs ago when involved in a cfs study through griffith university on the gold coast.
I have since tried to get it done through them outside of a study and it was a strong no. But can enroll in their studies.