Process of diagnosing ME/CFS (work accommodations)?

[gm286]

I am being seen at what is arguably the most competent medical complex in Oregon. Unfortunately, as anticipated, ME/CFS care is mitigated, some good some bad.

The PCP, whom I met for the first time on Friday, seemed helpful insofar as he was willing to listen to my story and then to try some medications that are more or less trialled in ME/CFS, Fibromyalgia, IBS, etc.

The red flags came later: he recommended GET (I then asked him if he was aware of the controversy there). Then, when I informed him I intended to pursue diagnosis, he skeptically questioned it: "We could not theoretically diagnose it because how would one diagnose a syndrome?"

This is ridiculous. I obviously intend to put up a front and resist / counter this because in no way will I allow a PCP to position himself re: my illness in this way.

My question: one of the important goals in getting a FORMAL diagnosis is to be able to not hide behind my illness (or hide my illness quite simply) and be comfortable enough to ask for work accommodations if need be in the future.

How does this process work? What goes into getting a 'formal diagnosis'? Are papers filled out? Is the PCP the only person who can legally diagnose and fill out these papers? Can I just bypass him and pay a specialist (if I find one) to diagnose? Does he have to refer me?

Just trying to figure out how much power my PCP has in this situation, if he intends to further resist. I am uncomfortable in these situations because to me they should simply NOT be happening, especially given my illness is now seventeen years old.

 

[Rufous McKinney]

My question: one of the important goals in getting a FORMAL diagnosis is to be able to not hide behind my illness (or hide my illness quite simply) and be comfortable enough to ask for work accommodations if need be in the future.

I was employed full time. I was able to use a federal program through my employer. (not federal). I can't believe I am so Forgetful at this moment- what was that program called?

1) there is a form that you go through and fill it out. then you get your Primary to sign it. This is a yearly process.

What exactly you are sick with IS PROTECTED information under medical privacy laws. I was not to even let my own supervisor know "what I am sick with". (Medical privacy laws)

2) that program enabled me to use sick leave I had accrued. To accommodate my ongoing "illness".

Otherwise, I was required to obtain a doctors note in arrears for any day I was out sick after having to call in at 8 am to be sick.

(sick with ME CFS, calling in at 8 am MADE ME GET SICKER. and I don't go to the doctor and get doctor notes: I am horribly sick on the bed).

I had an SEID diagnosis from my PCP at that time. What does it mean? I really don't know. Its not based on a list of tests run; or on sitting down with SEID criteria and checking boxes. None of that happened.

***
I will try to "remember" more..in case it might help you...

 

[Rufous McKinney]

Meanwhile, its sounds like this PCP is going to be very hard to work with.

I was so lucky after 58 years, I stumbled into somebody who understands this illness to some degree. In California.

Diagnosis: there are diagnostic criteria....

And GET is not a treatment for ME CFS.

ok: some other concept tied to employment is Reasonable Accommodation. thats another thing ...I recall and now I am quite vague about all that.

One of my coworkers ended up with severe vision issues and could not drive. He was provided Reasonable Accommodation....so that was not about "being sick and using sick leave"...it was about modifying duties etc.

(of course, I also "Modified my duties" when it all got very difficult for me (the last few years of working, the ME getting worse, and I could not drive far, either)

 

[BrightCandle]

That sounds like a doctor that is going to be of no use to you unfortunately. Ill informed, out of date and using syndrome as a Psychology wave rather than a complex poorly understood condition. I wouldn't bother trying to push on that piece of string further, fire this one and get another since that doctor is broken. Most doctors are broken, you are looking for the 1 in 100 that bothers to keep up with anything at all since med school and isn't a prejudiced arsehole, they are rare.

 

[gm286]

@Rufous McKinney Thank you greatly for the response, it certainly was informative.

It’s just really difficult to communicate with conservative leaning PCPs, and mine is one example of this, I can just sense it oozing out of his every response and thought process.

Will try for some kind of test or knowledgeable healthcare provider. I heard of something called the 2-day cPET test for documenting PEM.

Also heard of this recently: RTHM (telehealth with progressive, aware, sensible providers and who were previously affiliated with ME/CFS research).

 

[Rufous McKinney]

so if you signed up for GET tomorrow, you'd still be sick now.

GET is a process. Does the doctor simply assume by enrolling in something GET, your now well?

something illogical about all this.

so we now know that its likely you can discern "problems" by doing a 2-day Cpet test....the criteria out there do not "require" a CPET test.

And you are aware, that the test will likely make you sick and crash and could worsen your condition.

(my failed personal GET challenge, over the course of three consecutive days, led to a 60 day crash and I could argue I was just more WORSE after)

I think its accurate to say there is no approved diagnostic test for ME. (or SEID, or CFS)

And often teh problem becomes the insurer. THEY won't cover stuff because of the lack of "diagnosis".

 

[BrightCandle]

My advice is to seek out a doctor who actually knows about ME/CFS and get a diagnosis that way, go off another patients recommendation or mepedia. They will do appropriate tests to rule something else out and then on symptoms give you a diagnosis. That is the route I have seen people with a diagnosis take, its the only one that really works reliably.

The issue is usually those doctors don't take insurance/work publicly, many have been expelled by the existing medical service to be replaced by Psychologists and Physiotherapists (which is why the normal route doesn't work). Your typical GP/PCP is not aware of the changes in the past decade on the condition and will largely just hamper your attempts to make progress, you have to go to a specialist who you already knows is up to date with the science and provides ME/CFS diagnoses based on biology. But its the fastest route and the most reliable, it may be the only route that actually works. In my experience its not possible the normal way.

 

[gm286]

Agree with everything you both said.

My immediate objective is to identify an ME/CFS knowledgeable doctor in a nearby state (Utah, California) who will see me and, if a referral is required, whom my PCP will agree to refer me to.

The fatal and decisive factor with this PCP will be if he cooperates in that process. If he does not, I will drop him hard and fast and ask to be seen by another.

 

[BrightCandle]

Agree with everything you both said.

My immediate objective is to identify an ME/CFS knowledgeable doctor in a nearby state (Utah, California), who will see me and, if a referral is required, whom my PCP will agree to refer me to.

The fatal and decisive factor with this PCP will be if he cooperates in that process. If he does not, I will drop him hard and fast and ask to be seen by another.

Usually with these doctors its possible to self refer.

 

[wabi-sabi]

The fatal and decisive factor with this PCP will be if he cooperates in that process. If he does not, I will drop him hard and fast and ask to be seen by another.

You might try out another PCP now, just in case. With most of the ME/CFS specialists you don't need a referral. You can call them and get an appointment yourself. The trouble is that waiting lists are very long, since there are so few of them.

I would be curious to try to see the Workwell Foundation in CA, if you have that ability. I think they do the CPET testing that can be helpful in documenting disability. They also have a letter that you can bring to your PCP explaining the dangers (and inapropriateness) of GET. Your doc might listen to another doc better than he listens to you.

link to letter below:
https://workwellfoundation.org/wp-c...T-Letter-to-Health-Care-Providers-v4-30-2.pdf

 

[gm286]

@wabi-sabi Thank you so much for that additional document. It's only been two days but I've been compiling updated information from the IOM/CDC, Update on Clinical Evaluation and Care, Facts, Symptoms, Proposed Diagnosis Algorithm, and Documenting Disability. Will leave them here in case someone else could make use of them.

A pwME from Oregon just earlier today referred me to the CPET Workwell Foundation Test.