NIH Telebriefing re ME/CFS - July 10 (open to international participation)

[Anne]

Apart from the very moving speech from Sonia Heller great input from Betsy Keller, Leonard Jason, Nancy Klimas, Eileen Holderman, Donna Pearson, Wilhelmina Jenkins, and others.

Many reiterated the need for further RFAs.

Well done, thank you do everybody!

A question was put regarding enterovirus (research from Chia and others) and Nath said they would look into that - however, I didn't hear any information on whether they will actually be taking stomach biopsies (?) Does anyone know? If I have this right that's the only way to check whether a patient has active enteroviruses.

Tagging @mango

 

[Nielk]

Advocate Eileen Holderman called in and commented on the fact that NIH's Dr. Been kept describing the disease as "chronic fatigue" as opposed to the proper name.

Chronic fatigue is not a disease. It's a common symptom of many conditions or just something everyone feels from overwork.

One would expect members of the NIH MECFS workgroup to know the difference between the disease ME/CFS and the condition of being tired.

She reminded them that at first NIH was going to use the Reeve's criteria for the NIH study. The Reeve's criteria describes chronic fatigue not the neuroimmune disease ME. She stated that the criteria used for studies is crucial and that only our expert criteria CCC or ICC should be used for the NIH study as well as for all studies on the disease.

Dr. Nath assured her that the Reeve's criteria is no longer being used for the NIH study and that experts are making sure that the right patients are included in the study.

He said that it's hard to police everyone to use the correct name for the disease. Eileen replied that it's not a matter of policing. It's a matter of proper education.

 

[Anne]

Later someone said that "policing" might actually be needed. Which is true, because terminology matters! And it's also true that it's a matter of proper education.

About enteroviruses, @viggster might know if stomach biopsies are being taken in the NIH intramural study?

Also tagging @mango

 

[Dolphin]

A quick way to double private research funding is to double the number of ME/CFS diagnosed. Simply getting from 1/8 ME/CFS diagnosed to 2/8 diagnosed should do it.

Yes indeed.

One thing that can raise awareness and hence diagnosis rates are fund-raising events. The condition and its symptoms will often be described to an extent when the event is being highlighted, either in general or as it affects one individual. Then on the day awareness will often be raised. Some events can get mentioned before or afterwards in local media, again raising awareness.

 

[Dolphin]

Worth highlighting the chronic fatigue syndrome point but I don't tend to read too much into it at an individual level. I remember Abhijit Chaudhuri using "chronic fatigue" and also some knowledgeable US expert like Klimas or Montoya.

It can be natural to shorten long terms when speaking if you use them a lot. Best of course to use ME or CFS.

 

[Nielk]

Worth highlighting the chronic fatigue syndrome point but I don't tend to read too much into it at and individual level. I remember Abhijit Chaudhuri using "chronic fatigue" and also some knowledgeable US expert like Klimas or Montoya.

It can be natural to shorten long terms when speaking if you use them a lot. Best of course to use ME or CFS.

I strongly disagree.

Historically, our government health agencies have attempted to disappear the neuroimmune disease ME with various nefarious actions.

One of their strongest tactic is to pervert the disease into just a symptom of tiredness or chronic fatigue. This way, they can minimize the severity and can get away with ignoring us and not funding research.

So, the perpetuating of this misnomer, regardless by whom - is a grave misdeed.

It also enables these agencies to get away with overly broad, meaningless criteria which have stunted scientific advancement for decades.

On today's call, it was apparent that not only was the meaningless name chronic fatigue used by Dr. Bremen but the context was troubling as well. Dr. Whittmore explained how she and Dr. Bremen attended a symposium on sleep which had components in fatigue and she felt this was important information to help them understand MECFS!!!!

This only makes sense if one believes ME is a disease whose main component is fatigue - which its definitely NOT.

If NIH, after more than three decades, do not get this, we are in big trouble.

 

[Nickster]

Some highlights so far for those unable to join:

• Good shoutout to the InvestInME conference
  
• NIH had good discussions with NIHR and MRC in UK about collaborative research (ruh-oh, hopefully this doesn't mean NIH will now start funding more BPS...)
• Mark Davis at Stanford seems to have some new interesting findings, still to be confirmed prior to publication.

What do you think Mark Davis findings could be?

 

[Never Give Up]

What do you think Mark Davis findings could be?

I believe he said that Mark Davis was applying some new technology to ME/CFS with good preliminary results, but that he wanted to double check and make sure of his findings before publishing them. This is a technology that he just published about as applied to TB. Probably this:

https://www.nature.com/nature/journal/v547/n7661/full/nature22976.html

We show that GLIPH can reliably group TCRs of common specificity from different donors, and that conserved CDR3 motifs help to define the TCR clusters that are often contact points with the antigenic peptides. As an independent validation, we analysed 5,711 TCRβ chain sequences from reactive CD4 T cells from 22 individuals with latent Mycobacterium tuberculosis infection. We found 141 TCR specificity groups, including 16 distinct groups containing TCRs from multiple individuals. These TCR groups typically shared HLA alleles, allowing prediction of the likely HLA restriction, and a large number of M. tuberculosis T cell epitopes enabled us to identify pMHC ligands for all five of the groups tested. Mutagenesis and de novo TCR design confirmed that the GLIPH-identified motifs were critical and sufficient for shared-antigen recognition. Thus the GLIPH algorithm can analyse large numbers of TCR sequences and define TCR specificity groups shared by TCRs and individuals, which should greatly accelerate the analysis of T cell responses and expedite the identification of specific ligands.

 

[Londinium]

We show that GLIPH can reliably group TCRs of common specificity from different donors, and that conserved CDR3 motifs help to define the TCR clusters that are often contact points with the antigenic peptides. As an independent validation, we analysed 5,711 TCRβ chain sequences from reactive CD4 T cells from 22 individuals with latent Mycobacterium tuberculosis infection. We found 141 TCR specificity groups, including 16 distinct groups containing TCRs from multiple individuals. These TCR groups typically shared HLA alleles, allowing prediction of the likely HLA restriction, and a large number of M. tuberculosis T cell epitopes enabled us to identify pMHC ligands for all five of the groups tested. Mutagenesis and de novo TCR design confirmed that the GLIPH-identified motifs were critical and sufficient for shared-antigen recognition. Thus the GLIPH algorithm can analyse large numbers of TCR sequences and define TCR specificity groups shared by TCRs and individuals, which should greatly accelerate the analysis of T cell responses and expedite the identification of specific ligands.

I wonder if that abstract is also available in English...

(Seriously, can somebody smarter than me try and explain this, and massive speculation on how this could be applied to ME/CFS would also be welcome. I have my own thoughts but am uncertain whether I've even understood the TB experiment properly from this)

 

[Aroa]

What do you think Mark Davis findings could be?

Probably this is related to Cort Johnson´s article "The Seahorse and the Nanoneddle", saying Ron was mum on what Mark is finding. Apparently he is trying to develop an immune signature for Me and seems to be fascinated by T cells.

Also in the recent Immunology conference in Chicago, Mark Davis talk was : Evidence of T-Cell activity in ME/CFS

http://forums.phoenixrising.me/index.php?threads/immunology-conference-today-in-chicago.52181/


Apart from this, I wonder what this meeting means in terms of impacting the Budget allocated to ME ?

 

[IThinkImTurningJapanese]

He said that it's hard to police everyone to use the correct name for the disease. Eileen replied that it's not a matter of policing. It's a matter of proper education.

Brilliant!

 

[IThinkImTurningJapanese]

This only makes sense if one believes ME is a disease whose main component is fatigue - which its definitely NOT.

This is the problem when in need of understanding of the difficulties living with this illness, ie. asking for help.

This misconception is probably the most dangerous thing about having ME/CFS.

And it can be easily changed.

 

[viggster]

Later someone said that "policing" might actually be needed. Which is true, because terminology matters! And it's also true that it's a matter of proper education.

About enteroviruses, @viggster might know if stomach biopsies are being taken in the NIH intramural study?

Also tagging @mango

Stomach biopsies are not part of the protocol now. The team does have a lot of flexibility to add to the protocol. When I was there in April-May, the team was considering adding muscle biopsies and 2-day CPET. I gave them access to my 2-day CPET results, and the ME/CFS researchers were talking to the CPET expert at NIH about it.

A stomach biopsy is a pretty big procedure, right? Requires sedation, etc.?

 

[A.B.]

A stomach biopsy is a pretty big procedure, right? Requires sedation, etc.?

I think that apart from tissue taken being different it's the same as a duodenum biopsy, which I had done to rule out celiac disease. It was a small procedure that takes 5 minutes.

 

[Forbin]

A stomach biopsy is a pretty big procedure, right? Requires sedation, etc.?

I had it done without sedation. I don't recommend this.

 

[Sean]

I had it done with sedation. No problems.

 

[Londinium]

I had it done without sedation. I don't recommend this.

Whereas with sedation it's quite pleasant - like being wrapped in a warm comfy benzodiazepine blanket

 

[Tuha]

A stomach biopsy is a pretty big procedure, right? Requires sedation, etc.?

I think stomach biopsy is not that difficult. I had it several times and it´s not necessary to take sedation. The examination is not agreable but nothing horrible.
I think many patients make this examination because of GI difficulties - maybe it would be possible if a patient is doing a stomach biopsy like a part of a GI examination to send some samples from this biopsy also to NIH. So the patients wouldnt have to do an extra biopsy just for NIH studies.

 

[Anne]

Stomach biopsies are not part of the protocol now. The team does have a lot of flexibility to add to the protocol. When I was there in April-May, the team was considering adding muscle biopsies and 2-day CPET. I gave them access to my 2-day CPET results, and the ME/CFS researchers were talking to the CPET expert at NIH about it.

A stomach biopsy is a pretty big procedure, right? Requires sedation, etc.?

Thank you @viggster for replying!

If @A.B. and others are correct, it's not a difficult procedure, but - as I understand it - it's necessary if the researcher wants to rule out enteroviruses as a factor.

@viggster , are you in touch with Nath? Could you bring this up, do you think?

@mango

 

[viggster]

Thank you @viggster for replying!

If @A.B. and others are correct, it's not a difficult procedure, but - as I understand it - it's necessary if the researcher wants to rule out enteroviruses as a factor.

@viggster , are you in touch with Nath? Could you bring this up, do you think?

@mango

I mentioned enteroviruses to him when I was there and said a few researchers suspected them. So he's aware of this idea. We didn't talk about biopsies at all.