• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What are seminal studies in ME research?

necessary8

Senior Member
Messages
134
@JaimeS how is this project coming along?

I wanted to write a detailed guide for people who want to learn about ME/CFS, and a list of important studies is one of the key resources I wanted to include, but I personally dont have enough energy to spare for curating it over time. So a list made by you would be the best thing ever. But it seems that you haven't touched it much since the start, and it doesnt even have links to the studies that you did summarize. So is this project abandoned, or do you plan on making it work?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA

necessary8

Senior Member
Messages
134
@necessary8 -- as it says earlier in the thread, #MEAction put the summary here: http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf

It does have links, so I'm not sure what you're referencing!

There is more that should be done. The #MEAction one is a condensed summary of what I did, so I think I should divide the sections up by body system and post them separately; that isn't done yet.

Oh, excellent, thank you.

I was refering to the first post in this thread by you, as I assumed thats where you'll edit in the further progress.

The list you linked is very good, the only two important papers I see missing there are the random peptide immunosignature study by Lombardi, and the cerebrospinal fluid proteomics by Bregquist.

So now, what about the future of this? Does MEaction has a place where one can check for the latest version of this? If not, can I suggest putting it in a Google Doc, and editing in future important studies as they come? Would be amazing to have one link you can refer to for an always up-to-date list. This is the main problem i generally see with those lists - they get outdated, and then you have to look for a new one. We really should have a list that gets dynamically updated
 
Last edited:

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
the random peptide immunosignature study by Lombardi, and the cerebrospinal fluid proteomics by Bregquist.

The Bergquist is an interesting study, but in the end I only had so much space. :)

This is the main problem i generally see with those lists - they get outdated, and then you have to look for a new one. We really should have a list that gets dynamically updated

It's a good idea! I'd suggest it should be revised every six months or every year. What may seem groundbreaking today may reveal itself to be pretty basic (or wrong) after the hype dies down. I ended up going through hundreds of references and cited 80+. When #MEAction suggested a summary doc I thought there was no way I could pare it down, but I ended up reducing the length of the 30+ pp doc to about 3 pp.

There is someone who lists decent ME/CFS research without much qualification; I'll give that a search soon, I don't seem to have it saved yet (it's probably an open tab) right now.

I'll add this as well: http://microbeminded.com/2017/10/18/a-letter-to-the-mecfs-research-community-doctors-patients/

If your ideas aren't in one doc (they probably are!) you should do it, too. I was very busy when you made your initial posts, but in my superficial skim they looked promising.
 

necessary8

Senior Member
Messages
134
I ended up going through hundreds of references and cited 80+. When #MEAction suggested a summary doc I thought there was no way I could pare it down, but I ended up reducing the length of the 30+ pp doc to about 3 pp.
If maintaining it wouldnt be too much of a burden for you, having a full list along with the compressed one, would be amazing too.

If your ideas aren't in one doc (they probably are!) you should do it, too. I was very busy when you made your initial posts, but in my superficial skim they looked promising.
You mean my "ponderings on purinergic signaling" thing? It's a bit of a different format, I don't really intend on editing it in the future, instead I will post continuations. I've already posted Part 2
 

pattismith

Senior Member
Messages
3,930
This is very interesting. I have dry and red eyes for several years now and it only occurred recently to me that it might be part of CFS. It always got worse with Vitamin D and/or calcium supplements over several weeks, so I suspect there might be connection as well.


dry eyes can be part of the Dysautonomia syndrome, maybe it could explain why it is often present in CFS?

it can be present in mitoD too :

Secretory Glands All the glands in the body are part of the autonomic system; they are told to turn on or off by its signals. Consequently, dysautonomia can show various symptoms. There can be too much sweat or not enough. Dry mouth or drooling might be another typical symptom, or dry eyes and/or too much tearing. In the GI system, diarrhea or constipation are common symptoms.

http://www.mitoaction.org/blog/dysautonomia
 

Ember

Senior Member
Messages
2,115
There is more that should be done. The #MEAction one is a condensed summary of what I did, so I think I should divide the sections up by body system and post them separately; that isn't done yet.
The sections of the #MEAction summary highlight metabolism, exercise, neurological and immunological findings. In addition to the IOM report, the “General Information” section might mention the ICC considering that it defines ME as a complex disease involving profound dysregulation of the central nervous system and immune system, as well as dysfunction of cellular energy metabolism:
Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1–3] and immune system [4–8], dysfunction of cellular energy metabolism and ion transport [9–11] and cardiovascular abnormalities [12–14].
The ICC has four criteria:

• postexertional neuroimmune exhaustion (PENE pen′-e),
• neurological impairments,
• immune impairments, and
• energy production/transport impairments.

The 2-day CPET is the test given for PENE in the IC Primer.

The #MEAction summary reads:
GENERAL INFORMATION

THE INSTITUTE OF MEDICINE REPORT, 2015

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness is a literature review conducted by the then-IOM. A panel of experts reviewed over 9,000 separate studies to produce it. It concluded that ME/CFS is a multi-system disease often preceded by an immune challenge.
It might add:
THE INTERNATIONAL CONSENSUS CRITERIA (2011)

The International Consensus Criteria define myalgic encephalomyelitis as a complex disease involving profound dysregulation of the central nervous system and immune system, as well as dysfunction of cellular energy metabolism.

Collectively, members of the International Consensus Panel have:

• diagnosed and/or treated more than 50,000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
• several members have co-authored previous criteria.

The BMJ Best Practice document advises, by the way, that the ICC “symptom clusters are not organised by pathophysiological mechanisms, decreasing the value of these proposed myalgic encephalomyelitis diagnostic criteria” (p. 37).
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
The sections of the #MEAction summary highlight metabolism, exercise, neurological and immunological findings.

Yes, and there are other sections in the full document. Since each section in the original doc was longer, I was considering making each of them into an article.

In addition to the IOM report, the “General Information” section might mention the ICC

I went ahead and added the ICC to the long doc, thank you; though there are reasons I will continue to leave it off of the short summary.

I also wouldn't advertise how expert the authors are by stating how many people they've diagnosed or what their backgrounds are. None of authors of other documents have introductions / accolades in the document, so that would stick out.
 

Ember

Senior Member
Messages
2,115
I also wouldn't advertise how expert the authors are by stating how many people they've diagnosed or what their backgrounds are. None of authors of other documents have introductions / accolades in the document, so that would stick out.
The description of the Institute of Medicine Report does include this accolade: “A panel of experts reviewed over 9,000 separate studies to produce it.” That’s what led me to offer information for a parallel introduction.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
The description of the Institute of Medicine Report does include this accolade: “A panel of experts reviewed over 9,000 separate studies to produce it.” That’s what led me to offer information for a parallel introduction.

Fair enough. That was an attempt at describing the document while avoiding passive voice; my emphasis was on its scope, but I didn't want to say "9000 documents were examined" or "9000 references were included". :)
 

Ember

Senior Member
Messages
2,115
I went ahead and added the ICC to the long doc, thank you; though there are reasons I will continue to leave it off of the short summary.
Here’s a shorter version: “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness provides a literature review based on over 9,000 studies. It concluded that ME/CFS is a multi-system disease often preceded by an immune challenge.”

The IOM report also provides criteria, but unlike the ICC, these do not include immune impairments.