Petition to ask government agencies adopt ICC

Hey guys,

Can anyone of you give me some short information about the following questions.

The IOM report was requested by the HHS, right?

Why did the HHS requested the report in the first place? Pressure of patient organization like ME Action?

What was the order/question of HHS to the IOM? Was the questioning to define the disease “ME/CFS”?

In my view there are two conclusions coming from the IOM report that are really helpful. First it’s a severe physical disease and second biomedical research is needed.

But what I ask myself is the question if such organization should define deseases in general? Or did the IOM define other deseases in the past? I would rather assume that this is something that belongs to scientists?

The new diagnostic criteria IOM/SEID are another one on top of the ones we have already and makes it even more complicated

 

Their job was to look at and give an overview of the existing knowledge on the illness, create a clinical diagnostic tool, and come up with a new name to end debates around ME or CFS.

I suspect if you polled most clinicians involved, though, they'd probably say SEID as a name wasn't really needed, and that they were just following a brief. The reason I say this is because many of them contributed to the ME-ICC later.

 

For all the rhetoric about the name in the ICC (and ICP), a lot or most of the authors use ME/CFS (and sometimes CFS alone). Also ICC was not later but before.

 

Exactly. It's not straight-cut at all.

 

The ICC was created by consensus from a panel of clinicians and researchers who have had years of experience working with people with ME.

 

Indeed there were quite a number of sympathetic researchers and clinicians who were not psychologists or psychiatrists in the group who wrote the Oxford criteria.

 

The IOM report was requested by the HHS, right?

Yes. By multiple agencies at HHS funded this and I believe also Social Security Administration (SSA) contributed money. SSA is not part of HHS​

Why did the HHS requested the report in the first place? Pressure of patient organization like ME Action?

A 2011 NIH State of the Knowledge report called on the need for a case definition. Then the patient advocacy community and HHS's CFS Advisory Committee pushed for it and the clinician letter was also published but that came out after HHS had already committed to do this. ​

What was the order/question of HHS to the IOM? Was the questioning to define the disease “ME/CFS”? (Page 16 of the IOM report)

They were charged with "evaluating the current criteria for diagnosis of ME/CFS and recommending clinical diagnostic criteria that would address the needs of health care providers, patients, and their caregivers." More specifically, this included the following
- identify the evidence for various clinical diagnostic criteria for ME/CFS using a process with input from stakeholders, including practicing clinicians and patients;
- develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;
- recommend whether new terminology for ME/CFS should be adopted; and
- develop an outreach strategy for disseminating the new criteria nationwide to health professionals.
The committee was also asked to distinguish among disease subgroups, develop a plan for updating the new criteria, and make recommendations for the plan’s implementation. ​

In my view there are two conclusions coming from the IOM report that are really helpful. First it’s a severe physical disease and second biomedical research is needed.

I see a few other important conclusions:
- that PEM is a hallmark criteria with associated biological pathologies in energy impairment - this helps with the legitimacy of ME and of PEM.
- that the biggest barrier to getting doctors to properly care for patients is not their lack of knowledge but their negative attitudes
- the extensive evidence-based conclusions they made about the nature of the disease. ​

But what I ask myself is the question if such organization should define diseases in general? Or did the IOM define other diseases in the past? I would rather assume that this is something that belongs to scientists?

A significant part of the advocacy community, me included, fought the IOM initiative for exactly that reason. Normally, I'd expect it should be done not just by scientists but by expert clinicians. But we don't have a specialty and our clinicians don't have enough standing in the medical community to get the medical community to accept what they publish. CDC only updated their site once they had the IOM to back them up. And even with the IOM report and all its evidence, its hard to get the US medical community to change their narrative. In fact, some in the medical community have criticized the IOM and now the CDC with its new website for being taking over by the patients. The door is still only partially open but it is starting to move. With hindsight, I'm not sure what else could have started to do that. I think its also helped fuel the change in NIH as well. ​

The new diagnostic criteria IOM/SEID are another one on top of the ones we have already and makes it even more complicated

I agree with you and also with the introduction of another name. There's a lack of clarity on how the terms ME/CFS and SEID were intended to fit together - e.g. is SEID the intended name of the disease or just the name of the criteria. Also, this was originally slated as a clinical criteria only. Given the challenges with getting the medical community to believe the disease, I think simpler criteria focused on the hallmarks and backed up by solid evidence were necessary at least in the US. But now its being used in research, which is concerning. ​

As a side note, my bigger concern with research definitions, at least in the US is that the NIH and CDC are saying that any definition can be used, even if it does not require PEM. They also are not pushing for consensus in the methods used to assess the criteria that are part of the definitions.

EDIT: On why HHS commissioned the IOM report - I should have stated that patients and the experts letter were pushing for adoption of the CCC and CFSAC had recommended a consensus meeting starting with the CCC. HHS decided to do the IOM instead.

Should have also said that the above is my perspective on what happened. I'm sure others may have other/additional information and/or see it differently

 

Doesn't he have a psychiatric background? I don't mean he views ME as psychiatric (he doesn't), but we all have our "glasses" with which we view the world.

If you don't believe in psychiatric illnesses as such then you find none in CCC-ME, ICC-ME etc.

 

You may be right.

 

In Germany, at least in Berlin, it is done, and I don't see a problem with it. As long as there's no biomarker there should be self-interest in excluding other conditions that are known, accepted and can be treated.

 

As part of his latest blog @dave30th has supported this petition by sharing it, https://www.s4me.info/threads/david...he-cdcs-update-for-healthcare-providers.5196/

 

I don’t see why a slightly more complex criteria is unacceptable, perhaps it’s part of the issue of expecting primary care to diagnose. MS & lupus & sjogrens are quite complicated illnesses to diagnose requiring tests , as well as history etc AFAIK. I’d have thought any potentially chronic, serious illness was deserving of more than a “does this tick four boxes” assessment.

 

You're quite right, but I think the problem is that ME is something of an 'orphan' illness. There isn't a specialist to take ownership.

I imagine in specialised clinics, the wait is very long, and when you finally get there you're far more likely to be diagnosed by a psychiatrist who prefers to use Oxford than a neuroimmune specialist who uses ICC.

 

Echoing Adam @Cinders66 I'm pretty sure the IOM was designed to be used by primary care physicians in the US (i.e., GPs) currently in practice who have no training in ME. However, I also don't see why it couldn't have one or two more criteria and still be very simple.

Rheumatologists diagnose Lupus, neurologists, MS. They go through years of additional training in residency to learn about the diseases in their specialty and gain practical experience from the patients with these conditions who are referred to them. For these specialists, the pattern recognition really comes from the direct clinical experience over time, not the textbook, even if they will tick off the boxes to make a formal diagnosis. They can use a more complex diagnostic instrument/process because of their training, experience and the time they have with patients relative to PCPs.

This (very common) disease shouldn't need to be diagnosed and treated in specialty clinics. It should be diagnosed and managed by an -ist (we don't know which -ist yet), which should be possible to find in every town/region. The IOM criteria are in some ways a symptom of one of our most pressing problems: the lack of a speciality home. They wouldn't need to be simple if suspicion of ME led to a referral to an -ist.

Whether or not the IOM (w/ proper PEM definition) does a good job of diagnosing people with sensitivity and specificity, we do need to be educating doctors on the other symptoms patients may but don't necessarily have. It's important because, as the London criteria say, it helps validate the diagnosis; autonomic symptoms tend to go together (i.e., it's not just POTS but gut dysmotility, temperature dysregulation, and other neurological symptoms that may well be autonomic); and without it people with more overtly neurological presentations (such as myself) are still at risk of being diagnosed with conversion disorder or otherwise psychologized due to the often intermittent and confusing (to neurologists) nature of our symptoms.

I wish the IOM criteria were the instrument/rule of thumb algorithm that PCPs/GPs used to refer you to a specialist to run additional tests and confirm your diagnosis (as well as any overlapping conditions, e.g., NMH, POTS, MCAD). There is absolutely no way PCPs are equipped to manage people with this condition. That is one of the biggest, strangest assumptions of the CDC website.

 

Hi, just to be clear--I guess sharing the petition could be said to be "supporting" it, but I want to clarify that I'm not specifically endorsing it. It had garnered a fair amount of support and I thought it was newsworthy to share it, in light of the problems with the current situation.

 

That's true. More than 3000 signatures is pretty good in the "ME world", although some days ago there was one with almost 50.000 signatures.

 

Hmm, how it's presented doesn't make this clear at all, in my opinion. And something having a fair amount of support is a similar, if not exactly the same, argument that AfME uses to justify not condemning CBT and GET as treatments, so might not be the best reason to feature it. My concern is that a lot of people potentially will sign it without appreciating that there are complicated arguments surrounding the issue of case definitions, solely because it appears as a one-line item in your blog.

 

When discussing any criteria, focus has been on getting diagnosed or selecting patients for research.

What is repeatedly ignored is what is the end result for patients when any criteria are used.

We’ve seen for over 20 years what treatment for those who were diagnosed with CFS and then ME/CFS received due to the Fukuda definition. Treatment was psychological and exercise based. While the terms CBT and GET have been taken off the CDC website, very little has changed for the patients.

The current discussions centering around the IOM, in my opinion, have missed taking into account what main stream doctors will do for patients. As a support group leader who meets locally and online with many patients ranging from mild to severe I am still hearing that doctors have no understanding about ME being an immune system disease with cardiac involvement or addressing the neurological damage. Paralysis for the severe patients is continually ignored leaving patients with no way to get the proper understanding from their doctors or their family. Paralyzed patients being slapped across the face and told to snap out of it is still happening. That is lack of education plain and simple.

We’ve seen the studies and know that using the IOM just as with the Fukuda many people who don’t fit the expert’s criteria are being diagnosed with ME/CFS. Treatments for those patients may very well be appropriate as behavior modification driven. Behavior modification is inappropriate for someone who is so ill they have no control over their daily living – no “modification” is possible.

I support the ICC petition because I am tired of patients being told the following:

You are on your own and to cope as best you can.
Get used to this there’s nothing we can do.
You are just overreacting to normal stimuli – therapy will help.
You need to eat healthier and lose some weight
You spend too much time in your bed / room / house. Get out and socialize.
You have to move more – use it or lose it.
Gradually increasing exercise will get you well again.
You’ll get better eventually if you just…..

All those are based on blaming the patient or leaving it up to the patient.

Nothing I have seen in the IOM will change this treatment from doctors.

The ICC lists many tests and treatments that the EXPERTS who have treated thousands of patients have put into practice. Ignoring the experts in favor of leaving the patients to fend for themselves is not in the best interest of the patients’ improving their quality of life.

I have seen that many specialists have praised the IOM because they are happy that now more doctors can take on the job they have been stuck with of diagnosing patients. But what about that next step.

Where will all those now diagnosed with ME/CFS go for treatments?

The primary care doctors’ course of action will continue to be to leave it up to the patients to modify their behavior – pace better – eat better. When those patients realize that all the pacing and diet changes in the world are ineffective against ME, they will be flocking to the specialists who have developed treatments to improve quality of life. The few experts we have left already have year long waiting lists. This is a recipe for disaster.

By adopting the ICC our general practice doctors will have the understanding this is not a simple disease that patients can handle on their own. They will push for specialists who can take referrals.

We deserve the same as an RA patient going to a specialist or an MS patient going to a specialist. It is time patients finally received proper care and, in my opinion having been sick 29 years this month. only the experts’ criteria (CCC or ICC) is going to lead to that outcome.

So I fully support this petition. No matter what the final outcome the petition does a good job of educating everyone about the true nature of ME.