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    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.

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What do you think the IOM report missed? (Poll)

What aspects of this disease you believe the IOM report missed?

  • Immune dysfunction

    Votes: 10 62.5%
  • Mitochondrial, methylation and toxicity

    Votes: 8 50.0%
  • Genetic predispositions

    Votes: 2 12.5%
  • Gastrointestinal and microbiome

    Votes: 8 50.0%
  • Viral and pathogenic triggers

    Votes: 5 31.3%
  • Pain and inflammation

    Votes: 8 50.0%
  • Thyroid and hormones

    Votes: 3 18.8%
  • Neurological implications

    Votes: 7 43.8%
  • Treatment recommendations

    Votes: 5 31.3%
  • Funding for research

    Votes: 8 50.0%
  • Co-infections

    Votes: 5 31.3%
  • Other (please elaborate)

    Votes: 2 12.5%

  • Total voters
    16

Antares in NYC

Senior Member
Messages
582
Location
USA
Today we finally learned the findings and recommendations of the IOM report on ME/CFS, including a new term, SEID, that's already fostering a major debate.

The overall tone of the report and presentation was positive, giving this disease the recognition and attention it deserves, and criticizing the serious neglect from the medical authorities for decades. For your reference, here's a link to the Powerpoint presentation:
http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf

The report highlights mostly focused on a concrete number of aspects of this illness, namely post-exertional malaise, physical and cognitive impairments, unrefreshing sleep, and orthostatic intolerance.
This left many serious aspects of our condition, some of which are considered to be at the core of the illness, as secondary for diagnostics criteria.

I would like to start an informal poll to assess what the Phoenix Rising ME/CFS (SEID?) community thinks was left behind from the report, hoping this leads to an eventual response from patient groups to the IOM recommendations. While today's news gave us hope that the tide is turning on how the disease is conceived, it should be a starting point to build on this momentum.
Let's talk about it.
 
Last edited:

beaker

ME/cfs 1986
Messages
773
Location
USA
Today we finally learned the findings and recommendations of the IOM report on ME/CFS, including a new term, SEID, that's already fostering a major debate.

The overall tone of the report is positive, giving this disease the recognition and attention it deserves, and criticizing the serious neglect from the medical authorities for decades.

The report mostly focused on a concrete number of aspects of this illness, namely post-exertional malaise, physical and cognitive impairments, unrefreshing sleep, and orthostatic intolerance.
This left many serious aspects of our condition, some of which are considered to be at the core of the illness, as secondary for diagnostics.

I would like to start an informal poll to assess what the Phoenix Rising ME/CFS (SEID) community thinks was left behind from the report, hoping this leads to an eventual response from patient groups to the IOM recommendations. While today's news gave us hope that the tide is turning on how the disease is conceived, it should be a starting point to build on this momentum.

Do you mean discussed in the report or listed as criteria ?
That's a thick report going to take awhile to get through the whole thing.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Do you mean discussed in the report or listed as criteria ?
That's a thick report going to take awhile to get through the whole thing.
Criteria.
I read the full presentation, but not the full report. It will take me months to read with all this stupid brain fog. :confused:

I'll make a note in the opening post.
 

Gingergrrl

Senior Member
Messages
16,171
Funding, viral & pathogens, immune and mitochondria issues (but I could only pick three!)
 

Sean

Senior Member
Messages
7,378
Please don't rush this one, good people. It is going to take time to digest that extensive report and get to grips with it all. We can't do that properly overnight, or in a few days.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Please don't rush this one, good people. It is going to take time to digest that extensive report and get to grips with it all. We can't do that properly overnight, or in a few days.
It's not intended to be a formal or scientific poll, Sean, just our impressions after listening to the IOM's presentation today, or reading the report highlights.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I chose other because the biggest issue is the scope of the report was wrong, coupled with the methodology being flawed. Everything else follows. Like with the P2P I was worried we would get far worse from poor methodology. It is interesting that independent doctors and researchers who actually look at the evidence see the illness in a whole new light.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I have only skimmed the report.
Neurocognitive does not sum up neurological issues - only basic problems such as concentration, confusion aphasia etc, which is a start, but doesn't include seizures, brain lesions, myoclonus etc.

Is there a section on neuropathic type pain? (burning, stabbing, crawling, pins and needles and numbness?)

Is there a discussion on allergy and MCS? again, I have only skimmed it so may be missing vital points. If these are missing that is a big shame.
 

eafw

Senior Member
Messages
936
Location
UK
That's a thick report going to take awhile to get through the whole thing.

I do realise everyone has a different capacity, but the report is not quite as thick as it seems.

That is - the main content is only a part of it and can be meaningfully read while ignoring the introductory waffle, the pages of references and even the paediatric sections.

To add, the report iself is quite good but the issue is in the proposed new name and the diagnostics which actually seem to undermine the understanding of the condition that they show in the report.
 
Messages
35
The fact that some people have M.E. I mean some people, on autopsy, have been shown to have the 'itis' bit and have complained of muscle pain and, therefore, literally had M.E. and we don't know how many people who are not yet dead do in fact have M.E.