• 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.

*Having read the full IoM report*, do you think it was written to help allow insurers avoid paying?

*Having read the full IoM report*, do you think it was written to help allow insurers avoid paying?

  • I strongly believe it was written the way it was to help allow insurers avoid paying

    Votes: 1 3.1%
  • I believe it was written the way it was to help allow insurers avoid paying

    Votes: 1 3.1%
  • I don't know whether it was written the way it was to help allow insurers avoid paying

    Votes: 1 3.1%
  • I do not believe it was written the way it was to help allow insurers avoid paying

    Votes: 13 40.6%
  • I strongly do not believe it was written the way it was to help allow insurers avoid paying

    Votes: 16 50.0%

  • Total voters
    32

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Fact:

the IOM criteria does not exclude psychiatric conditions. Will long term disability insurers then deny long term coverage based on the fact that the patent with SEID diagnosis might be suffering from a psych condition?
The IOM clearly states that SEID is a physical illness.
BTW, as you know, the CCC doesn't exclude all psychiatric comorbidity.
 

Nielk

Senior Member
Messages
6,970
The IOM clearly states that SEID is a physical illness.
BTW, as you know, the CCC doesn't exclude all psychiatric comorbidity.

It does exclude active psych conditions that are untreated.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It does exclude active psych conditions that are untreated.
Like I said, it doesn't exclude all psychiatric comorbidity.
Also, significantly, the new criteria encourage an active and positive diagnosis of SEID, rather than a diagnosis of exclusion, so it's not necessary for other fatuiging illnesses to be exclusionary. Personally, I think this is probably a positive development, but it's early days to understand the full implications.
 
Last edited:

Kati

Patient in training
Messages
5,497
Look, psychiatric comorbidities means that if you have a history of bipolar disorder or schizophrenia, even a mood disorder, you are still eligible to contract a viral illness and develop SEID.
 
Last edited:

Sean

Senior Member
Messages
7,378
It is not up to the government to create or sponsor for setting criteria for disease.
So whose responsibility is it? Insurance companies?

These things don't arise spontaneously out of the ether. They have to be conscious deliberate organised processes, at the community level.
 

Nielk

Senior Member
Messages
6,970
So whose responsibility is it? Insurance companies?

These things don't arise spontaneously out of the ether. They have to be conscious deliberate organised processes, at the community level.

Historically criteria for disease are set/created by the private medical experts in the filed - not the government.
 

Ren

.
Messages
385
Fact: the IOM criteria does not exclude psychiatric conditions. Will long term disability insurers then deny long term coverage based on the fact that the patent with SEID diagnosis might be suffering from a psych condition?

At least one EU country already denies long term coverage to pwME/CFS who also have a psych diagnosis; Even when the psych condition is a secondary development - for example, following prolonged abuse within and by the country's socialized healthcare system and its workers.

------------

EDIT: Many (anyone know the numbers?) pwME/CFS battle insurers for years.

How many of these disabled/impaired individuals (most of whom are women / many (male/female) who belong to a minority group or are low-income) will experience some form of trauma or abuse during these years, from which they develop a psych condition?

Will they lose long term insurance bc of this? (In at least one EU country, yes.)

How many pwME/CFS who experience abuse/trauma/etc. will not seek help, for fear of losing access to insurance?

.
 
Last edited:

Nielk

Senior Member
Messages
6,970
To be honest, there needs to be a change in the law to end the discrimination of insurance companies against those with mental disorders. To refuse paying after 2 years for this or any similar reason is extremely unfair and discriminatory.

I totally agree. It is discrimination and it doesn't make sense. If ine is disabled from work, they are disabled. The cause of the disability shouldn't matter.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
. I think it is worth discussing whether the report was deliberately written to help insurance companies or not. I think it is a wild conspiracy theory that makes us look bad. We sometimes have to make claims that authorities let us down/etc but we might not be taken seriously if we have already made claims that are incorrect.

I personally havent really heard much about such claims about it being purposely written to help insurance companies so far (maybe just one) so this has come to me as a surprise. (I did have that worry about what it could be like BEFORE the report came out).

I cant comment thou on full report yet as Im yet to read it, Ive just been reading othes comments on it so far (thou I did read the new definition). I personally think from peoples comments that the IOM people tried but just have missed the mark in many ways (cause they werent all ME specialists etc).

Anyway, from comments Ive read on this, I do think any thoughts that it was written to purposely help insurers are in the minority among our communities as that hasnt been the general view Ive been getting.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
When it comes to written documentation, Stop thinking who wrote it, what was the intention is a simple matter of the words and how can they be interpreted. If a word is vague and there is room for misinterpretation. It will happen. PERIOD.

Lawyers make a living every day on this. Is the nature of the beast, you cannot foresee every case in the future so one has to be vigilant.

We have to point out the things that can hurt us later. It really does not matter if people intended for it to be that way. Just be vigilant of holes like this and patch them.

"It depends on what the meaning of the word 'is' is."

Sorry punchy reading all these posts. Eyes crossing. Insomnia rampant.
Must keep sense of humor . : )
 
Last edited:
Messages
58
My interpretation is this:

Chronic Fatigue Syndrome is poorly understood not just by the public, but by physicians, the media, and insurance companies as well.

Key criteria for the IOM, in order to effect change, are:

- More research dollars to determine the underlying cause of CFS/ME
- A re-branding of the disease
- Accurate diagnostic criteria
- A reduction in time to diagnose
- Better rapport between patient and physician
- A primary endpoint relevant to patient quality of life that pharmaceutical companies can use to develop treatments

Now we all know that CFS research has been massively underfunded to date, often has poor research quality (no offense to the researchers, this generally has to do with lack of funding resulting in small sample sizes and poor controls), and has often been co-opted to look at other, better understood research topics (MS, lyme disease, depression, PTSD, etc.). So putting this in the context of "what can the medical establishment do to fix this in the near term?", PEM as shown with the two-day cycle test showing a large reduction in VO2 max (http://www.translational-medicine.com/content/12/1/104) offers them the best framework out of a number of poor choices.

Advantages include:

1) The new name gives physicians who don't know much about the disease a new focus: exercise intolerance. Instead of a number of negative blood tests (which, for the overwhelming majority of the patients they see means "not sick" or "getting better"), a physician gets a numerical readout that says this patient cannot reproduce their level of exertion (VO2 max) two days in a row, on a level that has to be pathological.

2) This, in turn, provides physicians with a clear cut result to validate their approach "This patient is sick, and we're going to try drugs x, y & z to reduce their symptoms."

3) Exercise intolerance is a much better symptom for the physician to develop a rapport with the patient than other indicators like the pain, fatigue and mental fog. Pain, fatigue and mental fog are all subjective and have social stigma attached (Are they displaying drug-seeking behaviour? Malingering? How bad is it really? Do they just need more willpower?). They're also almost worthless diagnostically, between the number of other diseases sharing these symptoms and the fact that they are commonly faked. Remember, any normal GP is going to see many, many more problem patients than they do PWCFS, and they need a signature to reliably separate a "true" CFS patient from the noise.

4) Unlike all the PACE & GET controversy over the subjective nature of the "recovery", drug companies have a quantitative endpoint to test drugs against. This is hugely important, with the FDA becoming increasingly demanding that new treatments demonstrate significant improved patient outcomes. Besides, the industry is highly conservative, and wants clear timelines, milestones, and go-no go decisions on their path to drug approval, and won't spend money punching smoke instead of a clear target.

5) With PEM as a focus, additional research dollars may become available from a number of sources. Pharmaceutical companies want a defined molecular mechanism to target therapies for. Strength of NIH grant proposals goes up because of the increase in perceived significance, and because the chance of success is improved by working on a particular aspect of the disease.

At the end of the day, is there the possibility that this new name and report will encourage focus on one subgroup to the detriment of others? Absolutely. Is SEID a compromise? Of course, this whole report is about bringing CFS/ME back into the public awareness, which means trying to appease everyone, including insurers. Overall, though, I think the IOM did a pretty good job with what they had to work with.
 
Last edited: