#MEAction RFI Poll Report (Part 3 of 3)

Share on facebook
Share on twitter
Share on email

This is the third article in our series on the #MEAction RFI polling data.  Click here for Part I and here for Part II.

Clinical and Research Testing

06.Testing
Figure 1
Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due to concerns about damage to patients.

Potential Treatments

07.Treatments
Figure 2
Treatments that have an effect on cellular respiration were rated as most important by stakeholders.
Multiple studies have found errors in cellular respiration and general mitochondrial dysfunction in ME patients, including:

  • Disordered glycolysis
  • Coenzyme Q-10 deficiency correlated to cognitive dysfunction
  • Abnormality in the structure of mitochondria, including mitochondrial degeneration, atrophy of type II fibers, and fusion and branching of mitochondrial cristae
  • Preliminary evidence of disordered citric acid cycle

Given the complexity of energy metabolism, cellular respiration may be affected at different junctures of different pathways in different patients; this may be a source of patient subgroups. It is urgent that the NIH study energy metabolism dysfunction in ME an CFS patients and test the efficacy of replacement therapies.
Stakeholders also rated Rituximab and anti-virals as very important, while the indictment of CBT and GET therapies as practiced by the BPS school is clear.

Epidemiology and Medical Hypotheses

08. Hypotheses and Misc
Figure 3
Contrasting recovered or near-recovered patients with patients who progressively decline

Stakeholders prioritized understanding why some patients relapse-remit, some patients grow progressively worse, and others seem to regain or nearly regain their previous level of function – what is different about these 5% of adults who recover?

Children with ME

There are only a small handful of studies on adolescents or children with ME.

The Vagus Nerve Hypothesis

The vagus nerve hypothesis states that it is an infection of the vagus nerve itself that causes an exaggerated inflammatory response which results in the symptoms of ME. The vagus nerve signals the body to rest in the case of a peripheral infection, but an infection of the nerve itself would amplify this signal.

Genetics of families where ME is prevalent

27.96% of #MEAction survey respondents stated they had at least one family member with ME or CFS (n=1266). It may be that a particular, heritable immunological phenotype can predispose members of the population to developing ME or CFS.
Thank you again for your participation in the #MEAction RFI — you made it possible for us to turn in a thorough report describing the priorities of 1800 stakeholders!  Every bit of advocacy helps move us forward.
Save
Save
Save
Save
Save
Save
Save
Save
Save
Save
Save
Save
Save
Save

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

3 thoughts on “#MEAction RFI Poll Report (Part 3 of 3)”

    1. Thanks to everyone who participated! I keep reminding myself that I should publish the larger version, now that the #MEAction one is out! However, a lot happening as we approach the protests…

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top