The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

Part 2 of the blog about Dr Ian Lipkin's Collaborative, now up at ME/CFS Research Review

The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion

The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While Dr W. Ian Lipkin's NIH-funded Collaborative - the Center for Solutions for ME/CFS – is focusing primarily is on how problems in patients' gut microbiomes might drive the disease, his team is also probing deeply what happens when patients exert themselves. Lipkin says that the exertion studies are so important that the Collaborative will devote a third of its research resources to it.

When I spoke to Lipkin about the Collaborative’s work, he also said he was very hopeful that there would be real progress for patients within five years. More on this later in the blog.

Exertion studies
The Collaborative has a simple idea for exploring PEM: use two different exertion tests that should provoke symptoms in patients and then see what happens, both to how patients feel and to their biology.

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If biological changes, such as those to cytokines, ramp up along with symptoms then it’s more likely that the biological changes are directly related to the illness and should give clues as to their role. Any insights into the nature of PEM could lead to a much better understanding of ME/CFS.

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The crystal ball

I asked Lipkin how he thought things might look at the end of the five-year NIH funding for the Collaborative’s research program.

He was bullish about the prospects for significant progress. He made a comparison with the situation with cancer treatment 20 years ago.

He believes that in ME/CFS, as with cancer, a group of similar-looking patients will prove to have different causes or triggers for their illness but will share a final common pathway: “ME/CFS”. As with cancer, he expects they will find the specific cause of ME/CFS for some groups of patients quite quickly – the low-hanging fruit.

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read the full blog​

 

https://twitter.com/user/status/1029314119084789760


https://twitter.com/user/status/1029314119084789760

 

Very encouraging. I'm a little surprised that they will only be taking a baseline and a 24-hour post-exercise blood sample. The Lights' exercise/gene expression test took a baseline and four other blood samples - at 30 mins, 8 hours, 24 hours and 48 hours, which allowed them to see a sort of "response curve" over time. Having 50 patients and 50 controls might make that prohibitive, however. By comparison, the Lights' study only had 19 patients and 16 controls. This new study will also be collecting saliva and fecal samples, so they are doing a lot.

Looking for a "curve" may be not be worth the effort if they can find really distinct differences between patients and controls at 24 hrs, though it might have been interesting if a correlation were to be seen with the symptom reports that are to be taken at baseline, 24 hours, 48 hours and one week after the exercise.

Thanks for another fascinating blog @Simon M !

[ETA: Modified my post to correct some errors pointed out below. I really shouldn't post at 4:00 AM ]

 

I'm sure cost is a big factor: the metabolomics analysis in particular is very expensive. Although they have 100/100 patients/controls in the full sample, only 50/50 are definitely included in the exercise study, though Ian Lipkin said they hope to expand that to 75/75. All 100/100 will do the LEAN orthostatic test, but bloods will only be analysed for a subsample.

I think it's fair to say that Lipkin was frustrated that they were not awarded more funds to do the study more thoroughly: for instance, they don't have funds to analyse the stool samples. But having the samples is key, the analysis could still happen later.

 

The state of my health has spiralled downwards this year and is now dire, so this will be the last major blog from me for the forseeable future.

If my energy levels improve, I might in future be able to write some shorter blogs on simpler subjects, which might be a relief for everyone.

There should be another guest blog from Chris Ponting in the next couple of weeks.

 

Very sorry that that's the case - you've been providing a very valuable service!

 

https://twitter.com/user/status/1029389381017235456

 

I hope I am in a low-hanging fruit group. Can I be both a fruit and a grass?

[@Forbin isn't the only one who should not be posting at 4 AM]

 

So sorry to hear of downward spiralling, Simon. Take good care.

 

Thanks @Simon M for all the intelligent blogging you did while you could. Really hope your current health downturn is a temporary set back. Take care.