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Preliminary news from Lipkin & co

Daffodil

Senior Member
Messages
5,875
i dont want to dash any hopes, but what makes Dr Lipkin think this can be cracked in 3 to 5 years, when no one has been able to crack MS - a disease that has received a lot of funding for decades?

i once heard a researcher refer to our illness as "Atypical MS"
 
Messages
2,087
Lipkin isn't saying we will have a cure within 5 years. He is saying that he thinks we will be able to understand the disease mechanism within this time frame.

Yes I think 5 years is a realistic target to understand the disease.
Between all the different groups looking at this disease and the technology that is now available it should be possible.
It's the first foothold that is the most important - once a clear biomarker can be found funding and further research should snowball.

My own opinion is that nothing will change dramatically for the next 2 years or so. Even if a breakthrough were made it would have to be verified and replicated and that all takes time. However from 2018 onwards I do see things changing. Apart from Lipkin, the UCL team, the OMF should have some interesting results by then all of which will hopefully point us towards a biomarker.
Also the Norwegian trials will have so much data from a large group of patients ( and hopefully some responders ) it should provide a new level of understanding of this disease.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Researchers seem to have a habit of being over-optimistic, but perhaps he means that he hopes to gain some meaningful insights into the disease mechanism over the next few years. Considering the huge scope of his research program, perhaps it's not unrealistic to expect that he will find some meaningful insights, and some answers, and some sort of treatment, even if there isn't a cure.

If they find a reliable biomarker, or biomarkers, and a treatment that at least stabilises the illness (or improves it even a little), then that will be very welcome and a million miles from what we have now. (Frustratingly, I've already found a drug that helps to stabilise my symptoms - gabapentin - but I can't take it because of the side effects.)

Lipkin's research program includes: a hunt for pathogens in blood, cerebro-spinal fluid, and the digestive tract microbiome; testing for antibodies to pathogens; searching for autoantibodies; metabolomics; proteomics; immune signatures. And Lipkin does other spontaneous testing with his own money that he doesn't always tell us about, when he's interested in following a particular kind of enquiry. And what have I forgotten? Is he looking at gene expression?

Currently they are still underfunded, and my understanding is that the CII staff are giving their time for free to ME/CFS research, and fitting it around their regular remunerated work.
 

Gijs

Senior Member
Messages
690
I am sick for 20 years now and heard this so many times before. Scientists always say :"within 10 years we wil find it''. Now it is within five years. Do they have a crystal ball? Or are they gifted psychic? It's arbitrary. It gives hope nothing more.
 

SB_1108

Senior Member
Messages
315
Who volunteers to email Lipkin and ask him? :rolleyes::D:rolleyes:
Certainely someone has emailed him before?
I've emailed him before... I received no response but I didn't ask a question. Its understandable, I'm sure he is extremely busy. ;)
 

Daffodil

Senior Member
Messages
5,875
several yrs ago, a friend told me about a friend who wrote a letter to Lipkin and he actually called her...said something about investigating ticks

i have emailed Dr. Hornig before and she wrote back, but then stopped and I think changed her email lol
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Okay I'm going to make a wild assed guess: one related to growth or maintenance of blood vessels. The other related to toxic stuff coming from the gut.

The immune protein related to intracellular infections.

Probably not a good idea to even guess. But I'm plonking for metabolites of the trycat pathway - something like quinolinic acid.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
This is vague:

"The suspected pathogens don’t appear to be the problem (the CII is reportedly looking further at herpesviruses.)"

I look forward to hearing more about why they are continuing in this direction
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
"The suspected pathogens don’t appear to be the problem (the CII is reportedly looking further at herpesviruses.)"
BTW, I think we shouldn't interpret this to mean that Lipkin has concluded that no pathogens are involved. I think it might mean that none of the specific pathogens that they searched for in early studies (e.g. herpes, EBV, etc) were detected in unusual patterns. But Lipkin is still searching for pathogens (viruses/bacteria/fungi) in the microbiome studies, and he's searching for antibodies to pathogens, and he may use his new-generation virus chip (VirCapSeq-VERT) which detects all known vertebrate viruses. I think I've read that he will use this, and I'd be surprised if he didn't, but I'm not sure where I read it.
 

Forbin

Senior Member
Messages
966
Should we have a sweep - guess the metabolite ? ;)

This is just another WAG (wild ass guess) and I'm not cheer-leading for it, but I think that neurotransmitters are part of the metabolome and so might be considered "metabolites" in a broad sense. There has apparently been some work connecting low levels of the neurotransmitter dopamine to the fatigue experienced in diseases such as MS and ME/CFS. (See the 2015 paper below.)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4357260/
 
Messages
2,087
Whatever it is they've found I hope it comes with a plausible story attached and not just 'oh isn't that interesting'.

Yes. These seems to be the theme for most findings, they notice something different but nobody knows why or what it means. Until we get past this stage we are not making any progress.