Molecular Underpinnings of ME/CFS Explored at OMF Symposium (HR Blog / Working Group Details)

[Cort]

Unfortunately they don't have big or sometimes any research budgets for me/CFS. They do pilot studies or just do what they can with minimal funding. OMF has helped but Ron said at the symposium that the biggest block to progress is funding. That's why we are hoping their grant proposal for one of the NIH centers gets funded. Some of this research is included in that proposal. Cross your fingers and toes! It would be a wonderful thing to get these great scientists pulled into the field and attract more. Indeed, they are starting to realize what an interesting and urgent puzzle this is, and for them such things are fun! We need these people involved!

Let's hope. The nanoneedle could produce a diagnostic test and a way to test drugs and uncover that mysterious factor in ME/CFS patients blood plus there's the Mark Davis study on clonal expansion. Yes, let's cross our fingers that it gets funded.

 

[Janet Dafoe]

Let's hope. The nanoneedle could produce a diagnostic test and a way to test drugs and uncover that mysterious factor in ME/CFS patients blood plus there's the Mark Davis study on clonal expansion. Yes, let's cross our fingers that it gets funded.

Yes, and Mike Snyder and Mark Davis are on that grant too! It's not like any of them have a lot of funding for research on ME/CFS. NIH says they want to attract new researchers into the field, it's one of the stated purposes of the RFA for the collaborative center grants, and who better to attract!?!!

 

[Hajnalka]

Janet Dafoe said members of Ron Davis’ Stanford Group were buzzing with new ideas at their meeting the next week.

We "just" need the funding and these great researchers could solve this!

Xiao started off by noting the stunningly low quality of life findings in ME/CFS compared to other severe diseases.

The Fitbit tracking from the study is bearing that out; the average severely ill patient in the study takes about 1,000 steps a day – about 10 times less than the average healthy control in the study (@ 10,000).

This surprised me. That's about the number of steps I manage to do per day (homebound) and I'd consider myself moderate. I thought the patients in this study are so severe that they can't be brought to hospital, i.e. completely bedbound. I get that it's just an average (and some might not be able to walk) and that it's hard to find very severe patients in a certain radius and some might not be able to tolerate taking part at all. Hope I can express that right, of course I'm happy if people are not very severe. And no criticism, was just surprised.

Moreau got into this field in an unusual way. While director of research for a hospital, the Sybolla Foundation asked him to do an analysis of research gaps in chronic fatigue syndrome. By the time he finished the analysis, he said he’d fallen in love with the disease and applied for a research grant from the Sybolla Foundation.

Well, that's a first.

Naviaux couldn’t stress enough how important it was to stress ME/CFS patients’ systems and see what happens. Only then could you identify what’s being produced and not being produced in this disease.

Makes absolute sense (even for me as a layperson)! This makes even so much sense that it's hard to understand why it hasn't been done for decades. Excited with which new and creative ways to stress our system they'll come up (like the nanoneedle with salt, PEM by massage (mentioned in article), 2 day CPET, by electricity induced sweat)...

(If McGregor and Whiting’s findings are correct, they may have uncovered the first link ever to the sensory problems that dog so many people with ME/CFS).

This article gives me a lot of hope (a lot of more info in it)!

 

[Skycloud]

The Fitbit tracking from the study is bearing that out; the average severely ill patient in the study takes about 1,000 steps a day – about 10 times less than the average healthy control in the study (@ 10,000).

This surprised me. That's about the number of steps I manage to do per day (homebound) and I'd consider myself moderate.

me too! - if I do much more than this I get PEM

 

[trishrhymes]

I think the definition of severe depends on whether there is another category below it called very severe.

My fitbit records about 1000 'steps' a day, but that includes wrist movements it mistakes for steps, and short slow shuffling steps from room to room. So though it record 1000 steps, it's nothing like 1000 actual normal healthy energetic steps.

I class myself as severe because I'm housebound and 95% bed-bound and need help with showering etc.

But on that scale there's another group classed as very severe who cannot get out of bed and need 24 hour care.

 

[Skycloud]

My fitbit records about 1000 'steps' a day, but that includes wrist movements it mistakes for steps, and short slow shuffling steps from room to room. So though it record 1000 steps, it's nothing like 1000 actual normal healthy energetic steps.

Yes , that's how my 'steps' are measured. I do wish there was 1 international standard for defining severity. Hopefully that will come.

 

[Hajnalka]

Hi @trishrhymes, thanks! I'm familiar with the severity scales from mild to very severe. I guess because they said these patients can't come to the clinic, they have to go to them and that these patients are so severe that all samples can only be taken once and if a experiment doesn't work they cannot go back to get more blood and because Whitney takes part - I just pictured completely bedbound patients in dark rooms. Didn't mean to sound negative, I was just surprised in the first moment. Huge fan of the study!

Hope I wasn't insensitive, didn't want to imply at all that homebound patients are not severe! I just see myself personally with my abilities still in the moderate at the border to severe category.

Just out of curiosity: Would you be able to come to a clinic?

 

[trishrhymes]

Hi @trishrhymes, thanks! I know the severity scales from mild to very severe. I guess because they said these patients can't come to the clinic, we have to go to them and that these patients are so severe that all samples can only be taken once and if some experiment doesn't work they cannot go back to get more blood and because Whitney takes part - I just pictured completely bedbound patients in dark rooms. Didn't mean to sound negative, I was just surprised in the first moment. Huge fan of the study!

Hope I wasn't insensitive, didn't want to imply at all that homebound patients are not severe! I just see myself personally with my abilities still in the moderate at the border to severe category.

Just out of curiosity: Would you be able to come to a clinic?

Hi @Joh I don't think your comment were insensitive at all. You're right to ask. I have no idea whether I would be considered severe for this particular study.

I have difficulty deciding which category I fall into too. I think I'm probably borderline moderate/severe. I can go to a hospital clinic if it's nearby, and I have someone to push me in a wheelchair and I don't have to sit up for too long. And I'd probably be bedbound for at least a week afterwards. So yes, I could go to a clinic if I live close to it, but it would be difficult.

I agree my condition is nowhere near as severe as people bedbound in to dark rooms.

 

[Hajnalka]

@trishrhymes, I think you can safely call yourself severe. Made me sad to read this, sorry that you have to struggle like this. It's just not right how we have to live without support and treatment. And I know that you're a carer at the same time. You're a superstar!

Re: the severity scales, it's crazy what we call "mild" or "moderate" with this disease.

 

[trishrhymes]

You're a superstar!

Thanks, @Joh, that's so kind.

Apologies to all for derailing this thread. It's not about me, it's about the severely ill study at OMF which I think is a wonderful study and I'm really looking forward to hear more of what they discover.

 

[Janet Dafoe]

here an intriguing staement....

"Thus far the massive project has identified 14 genes that are possibly implicated in ME/CFS, including one highly suspect gene that had damaging mutations in every severe patient but not in a single healthy control."

Ron says: "@Cort didn't get this quite right. It is true that that one gene was mutated in all 20 of the severely ill patients, but this was compared to the population, not the healthy controls. That gene is mutated in about half the general population."

 

[Janet Dafoe]

Didn't know that such a huge study is happening with Mike Snyder. Makes me so hopeful!
"The ME/CFS study underway in his lab is huge – 10 families thoroughly investigated so far with many more to come and 175 non-familial cases of ME/CFS and 150 controls – all incorporated into a major multi-omics (genomics, metabolomics, microbiome, etc.) study (!!!)."

Mike Snyder's lab and the Genome Center are in the same building. This work is being done by Mike's post-doc Fereshteh Jahaniani. She and Ron and his team are working together; they meet on almost a daily basis, and share and discuss results and plan experiments. They share reagents and equipment.

 

[Hajnalka]

Thanks for the info! So exiting! Read about Mike Snyder and saw he did his postdoc in Ron's lab.

 

[Janet Dafoe]

They are still searching participants for the severely ill patients study

This is a new study on severely ill patients. This study includes their family members.

 

[Hajnalka]

Will go back and edit my post. This study sounds very exiting! So grateful that we have Ron on our side.

 

[Janet Dafoe]

The Snyder study was the most exciting part of the Symposium. My jaw dropped when I learned how big it was...(Who knew?)

This shouldn't be called the "Snyder study". It's a collaboration between Fereshteh Jahaniani, Mike's post-doc, with Ron and people on his team. They work together on it on a daily basis, and work right next to each other in the same building.