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Lipkin and Hornig ME/CFS Monster Study: Microbes, Immunity & Complex Data
- Thread starter A.B.
- Start date
I still think there might be a bias though, if only one that is a result of the available technology. It seems to me that they might be testing for antibodies against both bacteria and viruses, but only testing for physical proof of the viruses and not the bacteria. Perhaps this is because Lipkin doesn´t put much faith in culture techniques.
Anyway, I will shut up now and wait for the study to get funded, to be done, and then for the results to be published...and then I will either say I told you so or I will say nothing at all.
Anyway, I will shut up now and wait for the study to get funded, to be done, and then for the results to be published...and then I will either say I told you so or I will say nothing at all.
Whatever your beliefs, I hope people will donate to whatever research they think is best.
If most people gave just 1% of what they spent on (often speculative) treatments, this would add up to a huge amount of money. A large percentage of people with ME/CFS don't give any money to research and I get the impression it's similar in people who are focused on tickborne infections.
I would also like to see more fundraising: not just appeals for money like this but more on-the-ground fundraising. There is quite a lot of it in the UK for research but not that much in other countries (in the US, large sums are brought in by big donors). The Norwegian fundraising for the Rituximab trial is an example of how much can be raised if people put their mind to it.
People complain about governments not giving enough research but most governments outside the US don't give huge sums to research when one considers the number of conditions there are: I think people think because there are public health systems that governments are also responsible for funding most of the research but this is a recipe for slow progress as (outside the US) the research budgets aren't huge. It is as much the community's responsibility to raise money for research as it is the governments. People complain about the government but the community doesn't raise enough in my opinion.
If most people gave just 1% of what they spent on (often speculative) treatments, this would add up to a huge amount of money. A large percentage of people with ME/CFS don't give any money to research and I get the impression it's similar in people who are focused on tickborne infections.
I would also like to see more fundraising: not just appeals for money like this but more on-the-ground fundraising. There is quite a lot of it in the UK for research but not that much in other countries (in the US, large sums are brought in by big donors). The Norwegian fundraising for the Rituximab trial is an example of how much can be raised if people put their mind to it.
People complain about governments not giving enough research but most governments outside the US don't give huge sums to research when one considers the number of conditions there are: I think people think because there are public health systems that governments are also responsible for funding most of the research but this is a recipe for slow progress as (outside the US) the research budgets aren't huge. It is as much the community's responsibility to raise money for research as it is the governments. People complain about the government but the community doesn't raise enough in my opinion.
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They might employ Next Generation Sequencing, which would remove all bias. I don't know if we're potentially a few years out of that being used in large trials like this though. I hope not.
Come to think of it, if they did employ Next Generation Sequencing then that wouldn't cost anything extra at all to look for bacteria, as it finds everything in a given sample that has DNA/RNA.
You can even get something called a Nanopore MinION, which is a Next Generation Sequencing device the size of a USB and plugs into your laptop computer. They were used on the frontline in the Ebola outbreak in order to distinguish rapidly between Malaria and Ebola. They only cost £1000. Anyone can buy one. You could do your own Lyme diagnostics if you knew anything about bioinformatics and how to interpret the data, which you might be able to do with some concerted effort and an account at MG-Rast. The only problem is that the MinION has a margin of error of 1-4%, which is quite large when dealing with bacterial species. You'd need one of the bigger machines from Oxford Nanopore or Illumina to get rid of that margin of error.
And I've just found a company that offers NGS sequencing. I don't know if they do it for individual people or if it is aimed at companies/universities.
And just to be clear, it's not that I think at least a subset do not have a bacterial infection. It's more the case that I think that it is probably not Lyme and, as things stand, if I had to choose where to allocate resources it would be to looking for viruses (because of the apparent connection at onset) and at the gut microbiome (because of recent evidence suggesting a link). If someone could prove that we did have Lyme, however, I would be absolutely delighted as it would mean some answers. If that happens then by all means send me a private message saying "I told you so" - I would welcome it with open arms.
If it is the case that Lipkin and Hornig are employing Next Generation Sequencing then the whole debate has been a moot point anyway.
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Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Wow! I'm absolutely stunned. You think you've seen everything in the ME community, and then you come across a thread like this!
So, let's get our message to the world straight: we don't want the world-class scientist, world-leading pathogen hunter, Ian Lipkin (who has put ME/CFS on his bucket list as an illness to solve before he retires) investigating ME, or carying out the most comprehensive, in-depth, ground-breaking big-data study into ME that's ever been carried out, using the most advanced cutting-edge technologies ever known to the human race (including using a chip which can detect every virus ever known to have infected humans, and viruses not known to have infected humans, and novel viruses currently unknown to science; and technologies that will investigate the deeper workings of our biological systems via metabolites and proteomics; and an investigation of antibodies; and countless other investigations)... We don't want him investigating ME because... wait for it... there is an omission in a blog of a single stated intention to look for Lyme bacteria (aka somebody's pet interest) and other specific bacteria.
Is that the message we are sending to the world and to Lipkin's team? Quite honestly, a minority of posts in this thread makes me ashamed of our community, and I don't think I've ever said such a thing.
Sorry to be so blunt, but if you don't want Lipkin involved in our illness, then that's fine, but get out of the way of the rest of us. I'm too sick to be dealing with such utter nonsense. Go and do something useful instead of sending out such a disastrous message to the world. Don't interfere with my life in such an outrageously unreasonable and destructive way.
(I'm sure that this post is breaking many forum rules, and I'm happy for it to be moderated.)
Some notes to those complaining about the Lipkin study:
1. Don't assume that he isn't comprehensively investigating bacteria.
2. This isn't a study of Lyme disease; If Lyme bacteria are present then it's Lyme disease, not ME/CFS. If Lyme bacteria are hiding in tissues, but causing disease, it's still Lyme disease and not ME/CFS.
3. Don't assume that Lipkin won't look for antibodies to Lyme bacteria.
4. Separately, Lipkin is carrying out ground-breaking Lyme disease research, but has been struggling with funding. He's actually been out with a net, himself, gathering ticks from undergrowth in order to hunt for novel tick-borne pathogens that may be causing disease humans. He's also looking for antibodies in Lyme patients for the pathogens that he detects in ticks, in order to confirm that they may be causing disease or co-infections.
5. His cohort of ME patients will presumably already have been investigated for common infections, possibly including Lyme disease, and will have had negative test results.
6. If bacteria are lying dormant or hiding deep in tissues, and a patient has already tested negative in routine tests, will a further blood test for those bacteria have a positive result?
7. If common bacteria have a role in triggering ME, the bacteria may no longer be present when carrying out tests, in which case a test for bacteria would be negative and misleading in terms of its role in the disease.
8. If bacteria has a hit-and-run triggering effect for the illness (i.e. triggers the illness then is eradicated), then a test for the bacteria would be useless. In such a case, a test for antibodies would be a better test than a direct test for bacteria.
9. Is Lipkin including a test for bacterial antibodies in the blood? Answer: Yes he is.
10. If a common bacteria causes ME in some people but not in others, how would a positive blood test for that bacteria distinguish patients from healthy controls? (It wouldn't, so a blood positive test for bacteria would be useless in such a scenario, even if the bacteria causes disease.)
11. Lipkin knows all of this already. Being a world-class scientist, he's a thousand steps ahead of us all.
At least something good is coming from this thread... As with other people, it's prompted me to donate.
So, let's get our message to the world straight: we don't want the world-class scientist, world-leading pathogen hunter, Ian Lipkin (who has put ME/CFS on his bucket list as an illness to solve before he retires) investigating ME, or carying out the most comprehensive, in-depth, ground-breaking big-data study into ME that's ever been carried out, using the most advanced cutting-edge technologies ever known to the human race (including using a chip which can detect every virus ever known to have infected humans, and viruses not known to have infected humans, and novel viruses currently unknown to science; and technologies that will investigate the deeper workings of our biological systems via metabolites and proteomics; and an investigation of antibodies; and countless other investigations)... We don't want him investigating ME because... wait for it... there is an omission in a blog of a single stated intention to look for Lyme bacteria (aka somebody's pet interest) and other specific bacteria.
Is that the message we are sending to the world and to Lipkin's team? Quite honestly, a minority of posts in this thread makes me ashamed of our community, and I don't think I've ever said such a thing.
Sorry to be so blunt, but if you don't want Lipkin involved in our illness, then that's fine, but get out of the way of the rest of us. I'm too sick to be dealing with such utter nonsense. Go and do something useful instead of sending out such a disastrous message to the world. Don't interfere with my life in such an outrageously unreasonable and destructive way.
(I'm sure that this post is breaking many forum rules, and I'm happy for it to be moderated.)
Some notes to those complaining about the Lipkin study:
1. Don't assume that he isn't comprehensively investigating bacteria.
2. This isn't a study of Lyme disease; If Lyme bacteria are present then it's Lyme disease, not ME/CFS. If Lyme bacteria are hiding in tissues, but causing disease, it's still Lyme disease and not ME/CFS.
3. Don't assume that Lipkin won't look for antibodies to Lyme bacteria.
4. Separately, Lipkin is carrying out ground-breaking Lyme disease research, but has been struggling with funding. He's actually been out with a net, himself, gathering ticks from undergrowth in order to hunt for novel tick-borne pathogens that may be causing disease humans. He's also looking for antibodies in Lyme patients for the pathogens that he detects in ticks, in order to confirm that they may be causing disease or co-infections.
5. His cohort of ME patients will presumably already have been investigated for common infections, possibly including Lyme disease, and will have had negative test results.
6. If bacteria are lying dormant or hiding deep in tissues, and a patient has already tested negative in routine tests, will a further blood test for those bacteria have a positive result?
7. If common bacteria have a role in triggering ME, the bacteria may no longer be present when carrying out tests, in which case a test for bacteria would be negative and misleading in terms of its role in the disease.
8. If bacteria has a hit-and-run triggering effect for the illness (i.e. triggers the illness then is eradicated), then a test for the bacteria would be useless. In such a case, a test for antibodies would be a better test than a direct test for bacteria.
9. Is Lipkin including a test for bacterial antibodies in the blood? Answer: Yes he is.
10. If a common bacteria causes ME in some people but not in others, how would a positive blood test for that bacteria distinguish patients from healthy controls? (It wouldn't, so a blood positive test for bacteria would be useless in such a scenario, even if the bacteria causes disease.)
11. Lipkin knows all of this already. Being a world-class scientist, he's a thousand steps ahead of us all.
At least something good is coming from this thread... As with other people, it's prompted me to donate.
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Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Your posts suggest that you haven't read much about what Lipkin is planning, and that you have a profound knowledge deficit about the nature of Lipkin's plans. I strongly urge you to read up on his research plans; plenty of good quality articles have been written about his plans. His plans are vast and comprehensive; too comprehensive for me to fully comprehend. As outlined in my previous post, your posts also suggest a lack of understanding of the science (e.g. why a blood test for bacteria would be of no value in the scenarios that you've mentioned). And, to be honest, I find the attitude unfathomable whereby you think that either your very narrow pet interests are investigated (based on an apparent poor grasp of science) or the rest of the community (and huge ME research projects) can be damned.
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+1 If we want to talk about poorly spent money and exercises in futility we should really be talking about the huge sums of money being flushed down toilets with treatments and supplements...not Lipkin's work. Fund the research, not the supplement manufacturers.
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@Bob:
1) The original post of this thread specifically notes viruses. There seems to be no mention of bacteria.
2) I appreciate the distinction between Lyme and ME/CFS. I also appreciate the backstories which define the Lyme landscape, including Lyme not being a causative agent of anything other than maybe PTLDS...that it is a mere "nuisance" disease - The ramifications of directly linking Lyme to ME might upend some very important people and agencies and medical policies.
3) See response #1)
4) If you are alluding to @mango's study linked to earlier in this thread...there may be some serious assumptions made that really limit the import of the effort.
5) That is speculation on your part, and please let me know which TBD diagnostics are full-proof - or even remotely come close to certitude?
6) Maybe. Wanna flip a coin?
7) Again, speculation on ur part. Antibodies may linger; the IDSA claims they can. All one may need to do is demonstrate exposure, and the genie is let out, at least if the numbers are high enough in an ME/CFS cohort.
8) Depends on what mechanism is at play with ME/CFS. I don't know. But I'd like to find out - hence my opinion that TBD's need to be delibertaely and carefully included.
9) Ok, good. That is not what I inferred from the original post - can you provide a link to something that stipulates that, and if it includes TBD's?
10) Immaterial to at least LOOKING.
11) Few are immune to politics. And you may be surprised at the force dogma has on even the brightest. Hopefully, your assessment of Lipkin is spot-on.
I have ready many, many study plans and studies from countless researchers. I do not recall the specifics of most of those. I do know I think TBD's need to be researched better for their possible role in ME/CFS - if Lipkin is doing that with this study, great.
Diseases that afflict 300,000 each and every year and leave a mounting toll of around 60,000, accruing each year for God knows how long - at least 40 years? - is hardly a narrow pet interest. It seems to me it is every bit as compelling as EBV or enteroviruses or HHV-6&7 or parvoviruses - all of which I believe have equal merit as potential causative agents behind what eventually manifests as ME/CFS.
I am glad you donated. I think it is a good cause.
1) The original post of this thread specifically notes viruses. There seems to be no mention of bacteria.
2) I appreciate the distinction between Lyme and ME/CFS. I also appreciate the backstories which define the Lyme landscape, including Lyme not being a causative agent of anything other than maybe PTLDS...that it is a mere "nuisance" disease - The ramifications of directly linking Lyme to ME might upend some very important people and agencies and medical policies.
3) See response #1)
4) If you are alluding to @mango's study linked to earlier in this thread...there may be some serious assumptions made that really limit the import of the effort.
5) That is speculation on your part, and please let me know which TBD diagnostics are full-proof - or even remotely come close to certitude?
6) Maybe. Wanna flip a coin?
7) Again, speculation on ur part. Antibodies may linger; the IDSA claims they can. All one may need to do is demonstrate exposure, and the genie is let out, at least if the numbers are high enough in an ME/CFS cohort.
8) Depends on what mechanism is at play with ME/CFS. I don't know. But I'd like to find out - hence my opinion that TBD's need to be delibertaely and carefully included.
9) Ok, good. That is not what I inferred from the original post - can you provide a link to something that stipulates that, and if it includes TBD's?
10) Immaterial to at least LOOKING.
11) Few are immune to politics. And you may be surprised at the force dogma has on even the brightest. Hopefully, your assessment of Lipkin is spot-on.
I have ready many, many study plans and studies from countless researchers. I do not recall the specifics of most of those. I do know I think TBD's need to be researched better for their possible role in ME/CFS - if Lipkin is doing that with this study, great.
Diseases that afflict 300,000 each and every year and leave a mounting toll of around 60,000, accruing each year for God knows how long - at least 40 years? - is hardly a narrow pet interest. It seems to me it is every bit as compelling as EBV or enteroviruses or HHV-6&7 or parvoviruses - all of which I believe have equal merit as potential causative agents behind what eventually manifests as ME/CFS.
I am glad you donated. I think it is a good cause.
I'm grateful we have real scientists like Lipkin and Hornig taking an interest in our illness. Decades of "research" by self-styled "CFS expert" fringe doctors with their various pet pathogen hypotheses has brought us nowhere. I think metabolomics and microbiome is where it's at which is why I am pleased to see this sort of work being done by CII and OMF. I'm glad they're not focusing on Lyme since it's a garbage hypothesis that doesn't stand up to minimal scrutiny.
Actually, it's entirely impersonal. I attacked a hypothesis. Last time I checked, science is open to criticism. I'm pretty sure we're allowed to say if we think some or other abstract concept or research paper is trash. Unlike Lyme proponents who attack Lipkin all the time, I didn't impugn the motives of various researchers involved or question the integrity or intelligence of people involved in pushing the Lyme idea.
Lyme proponents attack Lipkin all the time? I'm sorry, you've lost me. Btw, that is pretty much a blanket attack on Lyme proponents, i.e. you are impugning them to a degree..
But you are entitled to your opinion.
Let me clarify. I do not care about Lipkin per se. I care if there are holes in his research.
Think about what you are writing. Do you imagine any of us have some grudge against Lipkin?
I fear you may be slipping into equivocation. I agree with you that it is the research that matters, and that is the subject - and has been.
But you are entitled to your opinion.
Let me clarify. I do not care about Lipkin per se. I care if there are holes in his research.
Think about what you are writing. Do you imagine any of us have some grudge against Lipkin?
I fear you may be slipping into equivocation. I agree with you that it is the research that matters, and that is the subject - and has been.
@Research 1st Insinuated Lipkin is deliberately avoiding Lyme because he does not want to 'ruffle feathers'. He implied Lipkin was towing the status quo in order to have a nice retirement and a great deal of prestige, and that any discovery of Lyme would quickly be brushed under the rug. That is seriously insulting to the academic integrity of a world leading research scientist who has gone out of their way to help us.
It's essentially a conspiracy theory directed at one of the CFS/ME community's most valuable proponents.
Lipkin not explicitly investigating your personal hypothesis is not the same as there being holes in his research.
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Haha, your post suggests that you didn´t read through the whole thread first before replying: if you had you would have noticed that I admitted to making the same mistake by not reading through the entire article before replying.
Oh, and you totally wasted that straw man. I would have liked to hear some quotes from him though.
It is not just my personal hypothesis, but even if it were, I would disagree.
As for Lyme opponents attacking Lipkin all the time, quoting one post to support an unsupportable claim is likely a losing proposition.
The only outstanding point that you might have been able to help us clarify was whether the study might have a perhaps unavoidable bias towards discovering viruses over bacteria due to the fact that they seem to be looking for physical and immunological evidence of the first, but only for immunological evidence of the latter. However, you seem to argue against yourself with regards to this point, making it hard for me to respond.