+100%-

The GIST is towards the bottom of the post

Check out Geoff’s narration

The GIST

The Blog

 

Highlights from the ME/CFS Roadmap Presentation at the Spring NANDSC Meeting 

VIcky Whittemore, Lucinda Bateman and Maureen Hanson presented recommendations produced by the Roadmap effort to the NINDS advisory committee called NANDSC. The Roadmap consisted of 8 day long webinars and culminated in a 148-page report that was delivered to the Council. Roadmaps are designed to produce strategic directions for the NIH and have resulted in increased funding in other diseases.

The NIH Wants Your Brain

Brain in a cage

The NIH is looking for ME/CFS and fibromyalgia brains to better understand these illnesses

The NIH wants your brain – it really does. (Not right now – later.) I don’t know when this happened but it’s happened. If you want science to make use of your brain to help understand what’s going on chronic fatigue syndrome (ME/CFS) or fibromyalgia after you’re gone there’s a way to do it.

This interesting possibility arose during the Q & A session after the ME/CFS Roadmap presentation. After  a NANDSC member strongly asserted – citing the need to look for things like “transposable elements. endogenous retroviruses and epigenetics” and damage to the brain and spinal cord that autopsies would be very helpful, Vicky reported that it is possible to provide ME/CFS brains to the NIH Neurobank. (Who knew?)

Noting that suicide is an issue with ME/CFS Vicky alluded to the sensitive nature of donating one’s brain, but Lucinda Bateman popped saying she’d just had a conversation with an ME/CFS patient who simply wanted to help out the field if she could.

It turns out that it’s remarkably easy (if not a little weird) to start the process. Click here to learn about the Brain Donor Project and here to begin the pre-registration process. After that you’ll receive an email with an information packet where you can more fully flesh out the details: your age, sex, health details, etc. ME/CFS, fibromyalgia, Lyme Disease and migraine are included. Long COVID is not. You must be over 18 and a U.S. citizen to apply.

Update! – ME/CFS Mentioned in Brain Donor Project Newsletter

We made news! Check it out. (Thanks to GH for passing this along.)

Donated Brains Needed for Chronic Fatigue Syndrome Research

Brain donation was a big topic last month when the Advisory Council of the National Institute of Neurologic Disorder and Stroke (NINDS) received a long-awaited report on how to advance the science of Chronic Fatigue Syndrome (ME/CFS). The lack of treatment (or significant research) for this debilitating disorder has frustrated patients and advocates, and this “roadmap” report (at 2:22:00 in this videocast) lays out recommendations for how to change that. As you might imagine, brain donation is needed to find answers and when the advocacy group Health Rising publicized this need, and advised patients to contact The Brain Donor Project, they responded. Last week alone 42 people reporting a diagnosis of ME/CFS pre-registered to be brain donors when the time comes.

Update! Netherlands Brain Biobank Opens

As Konjin and Jay reported in the comments the Netherlands just a couple of days ago opened its first brain biobank for ME/CFS. Find out more about that here. 

Check out a blog on what the limited but interesting brain and spinal autopsy results have shown so far in ME/CFS. Much more sophisticated analyses can be done now.

A New Funding Opportunity for ME/CFS (!?)

Just a week or so after Vicky Whittemore cited the difficult funding environment that persists at the NIH in general and NINDS, in particular, she stated that a new funding opportunity was in the works. This could presumably mean anything from an unfunded program announcement PA) that details aspects of ME/CFS that the NIH is particularly interested in (most likely?) to a fully funded Request for Applications (RFA) (not likely?).

Time will tell. We should know more about this soon.

Trans-NIH Working Group 

Now that the Roadmap has been accepted, the Trans-NIH Working Group is tasked with implementing its recommendations – not an easy task given the many, many recommendations (see below) and the many needs in this field. The WG can quickly do some things that don’t require money (or much money) but for those that do, my understanding is that the WG would need to make a request to NANDSC for the finding required to do that.

Some things that it appears will be done include:

Colorful genes

A genetics consortium will be formed to take advantage of the burgeoning genetic information that is coming available.

A Genetics Consortium 

Citing a great deal of unpublished data and the DecodeME work that is being done as well as long COVID data that has come available, Vicky said “geneticists are very anxious to come together” and move that forward. These consortiums typically bring researchers together to assess the genetics of a disease on a large scale.

A Clinical Trials Working Group 

It also seems clear that a “clinical trials working group” will be formed. While it’s not clear what it would do it may do things like make treatment recommendations for clinical trials, recommend testing protocols, how patient selection is done (?). Anytime experts get together as a body to make recommendations it helps.

The GIST

  • Roadmap Presentation – VIcky Whittemore, Lucinda Bateman and Maureen Hanson presented recommendations produced by the Roadmap groups to the NINDS advisory committee called NANDSC.
  • The Roadmap consisted of 8 day long webinars and culminated in a 148-page report that was delivered to the Council. Roadmaps are designed to produce strategic directions for the NIH and have resulted in increased funding in other diseases.
  • Donate Your Brain – During the Q & A session it became clear that if you live in the U.S. and are over 18 your can donate your brain (after you die, of course) to help researchers understand what has happened in ME/CFS.   Click here to learn about the Brain Donor Project and here to begin the pre-registration process – which is remarkably brief (if you haven’t participated in a research trial). After that you’ll receive an email with an information packet where you can more fully flesh out your age, sex, health details, etc. ME/CFS, fibromyalgia, Lyme Disease and migraine are included. Long COVID is not.
  • New Funding Opportunity for ME/CFS – Just a week or so after Vicky Whittemore cited the difficult funding environment that persists at the NIH and NINDS in particular she stated that a new funding opportunity for ME/CFS was in the works. What it is and whether it actually comes with funding is unclear. We should know soon.
  • Implementing the Roadmap’s Recommendations – The Trans-NIH Working Group for ME/CFS tasked with implementing the report’s recommendations. Since the report provided many, many recommendations it will be able to implement only a few of them. Thus far it’s clear it will create a Genetics Consortium to bring all the genetic information in ME/CFS together and a Clinical Trials Working Group to prepare the way for clinical trials.
  • Roadmap Recommendations – a long list of recommendations can be found in the last half of the blog.

https://www.healthrising.org/blog/2018/12/12/death-chronic-fatigue-syndrome-me-cfs-autopsy-files/

Roadmap Recommendations

Mauren Hanson – who delivered the research highlights – first focused on three of the eight areas the webinars covered – pathogens, and the nervous and immune systems – because they were of most interest to this committee.

cartoon of viruses

The role enteroviruses, Epstein-Barr virus and HERV’s may play was highlighted.

Pathogens

  • Enteroviruses –  A year or so ago Maureen Hanson produced a paper on enteroviruses and ME/CFS and she leaned heavily on them before the committee – stating “there’s good evidence for enterovirus as the pathogen and its possible that an enterovirus family member was the pathogen in all the mid-80’s outbreaks and like the ones in the earlier ones“.
  • Epstein-Barr virus (EBV) – is chronic EBV reactivation maintaining the illness or is it simply a “susceptibility factor”; something that people with ME/CFS are susceptible to but which is not necessarily driving their illness.
  • Endogenous Retroviruses (HERV’s) – these so-called “fossil viruses” that are embedded in our genome have not been studied much in ME/CFS but are actively being studied in other neurological illnesses.

Immune System

  • Is ME/CFS an autoimmune disorder?
  • Is an antigen (something foreign in the body such as a virus or a piece of a virus) driving parts of the immune system to exhaustion
  • Which immune signaling pathways are disrupted?
  • What role may little studied immune cells such as platelets be playing?
  • Where is the inflammation seen in ME/CFS coming from?
  • What role is the gut microbiome playing?
  • Pet imaging for the wholebody immune responses should be done.
  • What role is mast cell activation syndrome playing?
Blood flows to the brain

Understanding the cause of the reduced blood flows to the brain was a major topic.

Nervous System 

  • Neuroinflammation, reduced brain blood flows and small fiber neuropathy have been found
  • With reduced cognition a major concern, circulatory dysfunction in the brain and cerebral spinal fluid be assessed more thoroughly.  Likewise nitric oxide signaling and the Bh4 enzyme
  • The cause of the orthostatic intolerance should be investigated more.
  • With regard to unrefreshing sleep and sleep phase reversals investigators should attempt to find biomarkers for these conditions and assess cerebral spinal fluid/glymphatic flows during sleep

Circulation

  • Little is known about the extent and effects of endotheliitis, increased vasoconstriction, platelet activation and microclots and low blood volume.
  • Reduced cerebral blood flows, impaired oxygen sensitivity of the red blood cells and neurovascular dysregulation (not getting blood to the right places in the brain and elsewhere) have all been found.

Metabolism and Energy

  • With regard to metabolomics artificial intelligence should be brought to bear on the complex metabolomic findings.
  • Disturbances of the TCA cycle in the mitochondria may be impairing energy production.

Others

  • We need to understand the role connective tissue problems play.
  • the role spinal cord conditions such as cervicocranial instability and tethered cord play.
  • Gender differences especially need to be assessed and given the female overlay reproductive issues should be assessed as well.
  • Genome-wide studies need to be done.

OVERARCHING PRIORITIES (!)

Collaboration

More collaboration between researchers, doctors and patients is urged.

More Collaboration

…between researchers, clinicians, patients and advocates involving multidisciplinary cooperation and data sharing. (The committee wants researchers, doctors and patients to interact more. Doctors and patients want relevant research that can lead to treatments and can help researchers zero on key problems by providing anecdotal accounts of what works.

Plus, researchers should take into account the fact that many people with ME/CFS are willing to accept risks that might not be acceptable for people with other diseases in clinical trials. There’s also the strong need for interdisciplinary collaboration to help understand this complicated and multi-faceted disease.)

Innovative Approach

Citing those who got sick in the 80’s and have been sick for most of their lives there’s urgent need to develop an “innovative approach” to develop diagnostic markers, therapeutic targets and personalized treatments. (Dr. Hanson did not say what that innovative approach was – maybe it’s in the Report.)

Expand the Biobanks!

Dr. Hanson talked about the difficulty she had easily getting samples when she began studying ME/CFS. The small ME/CFS Biobank at the NIH needs to be expanded to include more samples and more different kinds of samples including cerebrospinal fluid, tissue and organ samples. Dr. Hanson called the lack of ready samples “the number one issue preventing investigators (as well as funding) from starting work on this illness.

Rigorous Research 

Well-funded studies with adequate cohort sizes are critical given the many small studies that permeate the field

Stages of Illness

Have studies assess the effects of duration and stages of illness. Dr.l Hanson mentioned that it is more difficult to recover after 5 years. An NIH funded study which will show the role duration plays will reportedly come out soon plus a recent study suggested that short-duration long COVID patients were intermediately affected relative to healthy controls and ME/CFS patients. Longitudinal studies that follow patients over time are critical.

Gender symbol

Recent studies indicate that men and women with ME/CFS are in some ways quite different biologically.

Subtypes and Gender Effects 

Recent studies make it clear that sex differences are present at the molecular level in ME/CFS. Likewise, it’s clear that substantial differences exist at the molecular levels between men and women. Dr. Hanson noted that clinical trials show that a subset of ME/CFS are improving although the trial as a whole was considered a failure. Clinical trials need to zero in and try to understand what’s happening to the improvers.

Educate Healthcare Providers

Eighty-five percent of ME/CFS patients may not be diagnosed and some ME/CFS experts are aging out.

Clinical Trials Need to Begin Immediately

Clinical trial networks need to be created to a) more efficiently produce clinical trials and b) help us use clinical trials to better understand ME/CFS. (Dr. Nath talked about this recently.) Perturbing a system with a potential treatment and then determining its effects can tell us so much (but is rarely done. (The Open Medicine Foundation’s LIFT trial is doing this.)

While some argue that standardized and validated tools to assess treatment outcomes are not present for ME/CFS Dr. Hanson asserted that we have the tools that can determine if patients are improving or not.

 

GET FREE ME/CFS AND FIBROMYALGIA INFO

Like the blog you're reading? Don't miss another one.

Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free  ME/CFS and Fibromyalgia blog here.


Stay on Top of the News!

Subscribe To Health Rising’s Free Information on Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Long COVID and Related Diseases.

Thank you for signing up!

Pin It on Pinterest

Share This