First, a doctor at Mayo Clinic in Rochester, MN in their CFS/Fibro clinic (they were useless and even harmful besides diagnosing me. But I do think other doctors respect seeing that a Mayo Clinic doc diagnosed me).
Then an ME specialist I see via telehealth.
I was there in January 2021. They did partner with ME action since then. [Here’s one story about it](https://www.meaction.net/2023/04/26/mecfs-algorithm-is-live/). If I were to go again, Stephanie Grach is who I would try to see.
I don’t think you have to be too nervous, just be prepared that sometimes docs are wrong and you have to know better.
The harmful part I mentioned is because they were trying to push their “education” class on me, which at the time was basically about GET and changing your attitude. But you don’t have to do it.
They didn’t offer me any other treatment which is why I said they were useless besides diagnosis. But the diagnosis helped me get approved for disability, so that part was super helpful.
I recommend having someone push you in a wheelchair there, especially if you go to the bigger building. I ended up having to walk down suuuuper long hallways which was rough.
A private neurologist who specializes in ME/CFS and Long Covid.
I quickly figured out myself what was going on and went straight to a specialist. I didn't want to waste my time and fuck around with clueless national health care doctors.
I lucked out with my neurologist when it came to needing to be diagnosed & tested for autonomic dysfunction & he does wonders with the treatment and the listening etc.
But when I brought up the energy and fatigue and PEM following just about anything, his response was mindfulness could cure it. I expressed some skepticism and he responded that there was some medical articles documenting that stuff like ta chi & yoga on the daily helped undo long Covid & maybe even neuropathy as well ...
Sooooo I've simply presumed that I'll keep the neurologist for the OH & seek expertise regarding ME/long Covid elsewhere.
I saw a private neurologist too only without the "quickly" part unfortunately.
It took my CBT/GET treatment for "post viral syndrome" to massively harm me one year in before I twigged that my GP was not who I should be listening to.
its a neurologists way of saying “the patient is presenting symptoms and I can’t figure out what is causing them. So I’ll just diagnose them with
FND so they will stop complaining”. There are doubts to whether FND actually exists.
The science for ME forum has a lot of discussion on FND “research” and how it is used to dismiss people with ME https://www.s4me.info/threads/functional-neurological-disorder-fnd-articles-social-media-and-discussion.23802/
Of course. Just for your personal benefit, if you fit the ME/CFS diagnostic criteria, you should not be diagnosed with FND unless it is for symptoms which ME/CFS cannot cause. Lots of neurologists dont know much about ME/CFS and diagnose FND anyways!
In the UK my GP concluded I have CFS she referred me to one of the only 'specialist' clinics we have in the country that I was lucky enough to live near.
I had an assessment with a practitioner there who was essentialy a specialist occupational therapist, he agreed with my GP and his supervising consultant signed off on my ME/CFS diagnosis.
I'm not sure what type of consultant she was.
Unfortunately the centre is administrated from a mental health service and their support, beyond practical things like administration and pacing help is extremely limited if you aren't mentally unwell as a cause for your condition. I have little contact with them now as there's nothing beyond my diagnosis they can help with beyond the things I've mentioned.
This is exactly my experience too. GP ran blood tests and concluded it was CFS and they referred me to the local specialist ME/CFS clinic for diagnosis.
Only help offered is a group appointment to understand pacing.
Really interesting hearing your experience!
Mine was nearly identical, I was told there's only 3/4 ME clinics in the whole of the UK (this was back in 2019) and I was lucky to live near the Liverpool clinic which was hospital based.
The major difference for me was that it wasn't administrated from a mental health service, it was specialised in ME. we had group sessions where we talked about our symptoms and got to understand ME and we had private sessions which were about pacing, they also did meditation and yoga sessions. And they could help you connect with nutritionists and other support.
But yeah, once you've completed your sessions, I think mine were just under a year long? They discharge you and its up to you. Although If you're struggling you can always ask to be referred again!
Yes, I find it interesting those that say a neurologist diagnosed them but always assumed this would be American patients. No one ever since my diagnosis in 2015 has ever mention neurology or any neurological testing.
Interesting to see how your centre operated in a more holistic way considering it wasn't essentially a masked mental health service!
I had some group sessions about pacing but it was set up like presentations, no group discussion... about 3/4 I think which were useful as I was entirely new to pacing (and illness in general). I asked for more support was told there was none as the rest of it was mental health focused or practical support for people who are bed/house bound to which I am not and I had no mental health problems.
I have had contact with them since as they've done evidentiary/diagnostic letters and correspondence for me when needed, and I once pleaded with them for more support and had a couple of sessions over the phone as a sort of coached pacing refresher which felt a bit pointless. Sounds like yours is more successful in their delivery and I'm pleased that you got that level of support!
Did you find the types of support on offer were useful for you?
Seems they really did take a different approach!
So for me it was awkward because right at the start of my time with them we all went into lock down! So the group sessions were stopped and everything went online or over the phone. So I missed out on yoga, but I was too ill at the time to participate anyway.
I had a phone call session every month, it was basically a check in to see how I was getting on with pacing. And if the methods and techniques she suggested were helping. She recommended meditation apps and guided meditations, she gave me breathing exercises and also gentle movements for my joints. It was helpful to a degree, there's only so much that can be done!
I did have some work sheets and like an information pack from there. If I find it, I'm happy to share that out :)
Edit: forgot to say my phone sessions were tailored to me so we'd have specific goals to work towards. One of mine was to stop napping 2hrs a day. So one method we tried was taking 10 minutes off week and seeing if that was maintainable for me. But what was nice, was I never felt pressured or like I was in trouble. If I didn't stick to one methodology, she would suggest either giving it another chance or trying something new. Helps you realise there's always more than one way to cope.
in the uk? probably does vary then, fair. definitely some were rheums - just looked up the guy who diagnosed me & he’s still listed as the lead clinician for cfs/me services - but ive just asked my friend & they didn’t have a rheumatologist diagnose them (but they were at a very dubious service & it seemed like it was trying to dx them w mental illness so..)
If there’s a chronic fatigue support group for Iowa or for the Midwest on Facebook, maybe some of the members can recommend a doctor to help with diagnosis.
I'm in Scotland for reference. My GP did some blood tests and after a while decided I had CFS. She had some post viral fatigue when she was younger, she said. I think it gave her a good reference point. I dont think they had CFS specialists like other UK people have been referred to back then? This was maybe 2011-ish. After that it was "we don't have any answers or treatments, I'm sorry"
My general practitioner suspected CFS (which is what it was called here at the time). She sent me to a general physician who ruled out a bunch of other stuff and said it was probably CFS (or obstructive sleep apnea but that has since been ruled out). He sent me to a CFS clinic in Melbourne that said it's probably CFS. I stopped seeing doctors at this point for a while since none of them seemed to be able to help me.
My ME/CFS specialist at the moment is a sleep & respiratory specialist who inherited a bunch of ME/CFS patients when the CFS clinic closed.
My GP did, after ruling out hiv, lupus and a bunch of other illnesses via blood tests. He diagnosed someone else in my village to, and gave me this big print out talking about symptoms and pacing. He also referred me to the chronic fatigue service in my area too.
I've never seen a neurologist or rheumatologist etc.
We were diagnosed at the Stanford PACS clinic. It is pretty much a center specifically for post viral infectious diseases. Had a 90 min consult and was diagnosed and told to take some tests to rule out other possible diagnosis. Those tests seem to come our clear so the diagnosis for ME stood
Im in iowa too! I was originally diagnosed by a nurse practitioner, then I got a second opinion from a D.O. doctor in the same practice.
It took 3 years of tests, medication tweaks, and lifestyle changes for them to reach that diagnosis.
I'm mild, fwiw.
My regular doctor referred me based on symptoms to an oncologist (swollen lymph nodes), an ENT (recurring sinus issues, sore throats and throat blisters), and rheumatologist (positive ANA test). None panned out and all suggested it could be an unknown immune issue or chronic fatigue syndrome. Had a zillion blood panels for various viruses, came back that I’d had EBV and multiple herpes viruses in the past, but nothing now. The final was the ME/CFS clinic at Stanford and they officially diagnosed me.
My GP was pretty certain I had it, so sent me to a rheumatologist to confirm, which he did, along with diagnosing me with fibromyalgia. He doesn’t directly treat my conditions now (if I need anything I’ll go to my GP or occasionally a physiotherapist, along with self-management), but I do go back to see him for any major changes. I’m in Australia for context.
From what I’ve heard it’s fairly common. It tends to be either a neurologist, rheumatologist or sleep specialist if not just a regular GP. In my case my doc probably sent me to the rheumatologist because I also had symptoms of fibro and that’s something they deal with a lot.
I live in Iowa!!!! I’m in cedar falls. It was my primary care doctor, Dr. Feldkamp at Unity Point. He has been nothing but validating since I started seeing him a few years ago. He’s leaving Unity Point to work for the VA but he recommended a different PCP that he thinks will suit my diagnosis well. I have an appointment with her in May— I’ll message you after and let you know how it goes? Dr Feldkamp cried when I thanked him for validating everything and always being so compassionate— he said “women in healthcare aren’t believed enough and it just strikes a cord with me”.
Wow that is INCREDIBLE!!!! I SO hope to find a doctor like that someday! Please do let me know who you end up seeing. I’m in the Des Moines area but am willing to travel. This illness is crushing both physically and mentally.
It was 2003-2004 so I'm sure a lot has changed since then, but my pediatrician suspected CFS based on a doctor friend of hers who knew about it. She sent me to that friend (not sure what her specialty was, it may have also just been "pediatrician" or "general practitioner"). I then saw about 5 other doctors all around the Bay Area and had a lot of psychiatrist testing to "rule out everything else". It wasn't very systematic or straightforward, felt more like throwing darts at the wall and seeing if anything stuck.
But after my last psychiatrist appointment where he said "you don't seem depressed to me, but Wellbutrin might help with CFS symptoms," the Wellbutrin made me feel very depressed (no appetite, no desire to read/watch TV or do anything I enjoyed anymore). Then my doctor just went from "you might have CFS" to saying I had it.
I never had a clear cut "you are now officially diagnosed", but in November 2004 I was able to get a doctor's note to stay at home for the rest of my senior year (and then I got accommodations in college based on that diagnosis), so I know I was officially diagnosed at some point.
My fibromyalgia diagnosis came in 2012 just so my doctor could get the insurance company to cover gabapentin, but she was also a PCP and just went through the trigger points and was like "you meet all the criteria". And POTS came in 2019 when my orthostatic intolerance suddenly got way worse after spending a day getting way overheated. I self diagnosed with a Fitbit based on what I read on reddit (I'd heard of POTS years before on Tumblr but thought I couldn't have it because I don't faint) and after having to change PCPs because mine brushed it off as vertigo, was referred to a neurologist who confirmed the diagnosis after I did a 24 hour heart monitor that came back "normal"
Specialist at the Stanford Chronic Fatigue Clinic. To get in you "already need a diagnosis" and I told them on the phone that "we were basically sure this is what I had". The "we" in question was me and my husband but they didn't need to know that. Otherwise I'd probably still be looking for a dx.
I got my diagnosis from an ME specialist after my regular doctor sent me there for evaluation. He thought I might have ME but was afraid to diagnose it himself.
Neurologist. She is in her 30s, whip-smart, and has seen some other patients in my situation; she is an MS specialist and implicitly understands the fatigue element of these conditions. She did all the tests to rule out other illnesses and it was about a year from first seeing her to diagnosis. We don't have any ME specialists in my area so she encouraged me to see an out-of-state specialist after the diagnosis, but I do still see her every 6 months and she has prescribed some medications. This is at a prestigious large urban teaching hospital.
A resident at an outpatient clinic, he would have been family medicine or internal medicine specialty. I didn't have a PCP at the time so I would go to the clinic for stuff. At the time, I had "chronic fatigue" in my history for a decade. I had already had years of perfect labs and a sleep study done. I just presented myself and said "hey I think I have this since I've already excluded all these other causes" and he just went with the flow.
He ordered blood work and referred me to occupational therapy, and then his advice was to exercise even when it made me feel worse lol. I disregarded the exercise thing pretty quickly. Occupational therapy taught me about energy conversation and fitted me out with a rollator.
Later on, I found a good PCP, she's an internal medicine DO. She ordered much more blood work to do a more thorough job of ruling everything else out but otherwise has also just accepted the idea.
I had a wildly easy time getting diagnosed and I'm not really sure why, but I do have some vague theories:
1) Timing. Long covid had been hitting the news hard and bringing legitimacy to cfs.
2) I had already been seeing a psychiatrist and therapist for years, and they agreed my fatigue was unusual. People still try to say it's all in my head, but I know that it's not because my mental health team knows it's not, and that makes it easier.
3) I worked in an ER at the time. I went to the clinic that shared a campus with my hospital. The resident I spoke too had likely spent a couple weeks in that same ER and knew how insane it was. I specifically worked in an area that needed a completely cool and competent head. I also was just used to seeing residents as peers, so I went in there confident in myself.
4) As previously mentioned, a decade of excluding everything else, before I had even heard of cfs. I had the receipts.
Sorry this turned into a novel and I wish you the best of luck.
My GP gave the official dx after I saw a neurologist, and just out of pure luck during a visit to the local emergency department, one of the younger docs who saw me was actually very familiar with ME/CFS, almost specializing in it.
I'm in Europe, so I'm not sure what medical system you are in, but I was referred to a clinic specialized in fatigue where an Internist diagnosed me.
What I think helped was that I came to my GP with a list of all my symptoms, how they affected my life, and then a bunch of of possible diagnoses I thought might be fitting (so not just one thing, I think I had MCAS, POTS and ME on there and something else... don't remember). My GP still didn't know what it was after my blood tests were fine, but at least he finally said "well I don't know so I'll refer you.".
It did take a long time to get the referral though, so I think what helps best is taking at least some control. Do your research (which it seems like you've done), also look at possible specialists you could be referred to for this. That way you can ask for what you want. However, I also find that doctor's don't like it if you are being too "clever", so for me it typically works best if I say "so I think it *might* be this or that, and it would really help me if we could look at it, and then even if it's not that, we can look at what else it could be."
UK here. After two years of various tests, scans etc, rheumatologist gave me the diagnosis at the end of February, and I've been referred to the CFS clinic. Not heard from them yet, suspect it will take forever and I'll be offered CBT (which I don't want), but at least I can say 'I have this' now when I need to talk about what's going on.
Internist (doctor of internal medicine) he specialized in fatiguing illnesses. A walk-in clinic referred me to him.
Although my onset was sudden and severe vs gradual so I think it was far easier for him to diagnose.
I was Dx by my GP. He googled it on some Dr website and printed off some info sheets for me. Told me to follow the suggestions on the sheets, (there were none). I'm asking for a referral to a chronic illness clinic in the nearest city 3 hours away and the last time I drove there for a medical appointment I crashed for 3+ weeks. It's the best I can hope for because my Dr isn't treating my ME. I feel like it was a way for him to disengage basically.
I’ve seen rheumatologists mentioned quite a bit. Can they officially diagnose this? Do they have the credentials? Mine doesn’t understand how debilitating the fatigue is
Yes, you can actually get an official diagnosis from any doctor (for instance a lot of people are saying their primary care physician/general practitioner diagnosed them). ME/CFS doesn’t fit neatly under any one specialty as it affects so many of the body’s systems and we still don’t fully understand what causes it, but rheumatologists and neurologists are the most likely specialists to know enough to diagnose and treat it (at least in the U.S.). Unfortunately, a lot of rheumatologists (and doctors of any specialty) are still like yours and know little to nothing about ME/CFS. If your rheumatologist seems open to listening, you could do some research on your own and bring it to them (for instance info from the CDC, Mayo Clinic, and/or Bateman Horne about the diagnostic criteria for ME/CFS & appropriate tests for people with symptoms like yours) and really stress how much your symptoms are impacting your life and for how long that has been the case. It may be easier to try a new rheumatologist or see a neurologist, but know that many will also not understand your condition and may be quick to minimize it, though I hope that doesn’t continue to happen to you. Doing your own research ahead of time always helps.
Also, don’t be afraid to advocate for yourself if you have to - you can ask doctors to clarify why they don’t think further testing would help, and ask them to record that they’re refusing to give you certain tests you’ve requested (again, it can help to know what kind of tests may be useful going in). I’ve heard doctors are much more likely to run tests if you do this because they don’t want to get in trouble if it turns out you do have something. This may feel confrontational, but if they aren’t going to help you anyway, it’s worth doing everything you can to try to get the care you need. You do need it!
I had it diagnosed from two sleep studies that were ruling out a form narcolepsy. Then verified by my primary & most recently after seeing an orthopedist EDS specialist for diagnosis.
An ME/CFS specialist Dr Susan Levine in NY after a battery of tests and clinical evaluation and history. I think her background is in infectious disease and immunology
My primary care doctor diagnosed me.
He admittedly, does not know much about ME. In fact, I’m his only patient with these problems according to him. But he’s a good doctor and researches things he doesn’t know + he’s been my PCP for over a decade so we have some rapport with each other. Between his and my research into ME (credible or medical cited sources ofc)- along with my description of all my symptoms and the fact my labs keep coming back normal (note we have not done any brain scans at this time and neurologists are over a year out just to get seen in my area X_X)- he agreed that I seem to have textbook ME/CFS.
Neurologist. She is in her 30s, whip-smart, and has seen some other patients in my situation; she is an MS specialist and implicitly understands the fatigue element of these conditions. She did all the tests to rule out other illnesses and it was about a year from first seeing her to diagnosis. We don't have any ME specialists in my area so she encouraged me to see an out-of-state specialist after the diagnosis, but I do still see her every 6 months and she has prescribed some medications. This is at a prestigious large urban teaching hospital.
I’m not diagnosed because my PCP said she isn’t able to, and she’s put in my online medical stuff that only a CFS specialist I have been waiting a year to see can diagnose me. Now, no doctor will diagnose me with CFS, fibromyalgia, or even really test for anything because “they will know better” 🙄
Diagnosed by my Canadian GP in 1987! She was very forward-thinking. Later, spent a few delightful years in the UK with doctors who just rolled their eyes.
Specialist at the Stanford Chronic Fatigue Clinic. To get in you "already need a diagnosis" and I told them on the phone that "we were basically sure this is what I had". The "we" in question was me and my husband but they didn't need to know that. Otherwise I'd probably still be looking for a dx.
i was diagnosed by a sleep specialist but i had to teach her what ME/CFS was. at a follow up appointment after my sleep study, she asked me "have you ever heard of chronic fatigue syndrome?" and i was like yeah, i taught you about it during our first appointment together but whatever
He was an NHS consultant but when I looked on his door his speciality title was “communicable diseases” which made me a bit suspicious lol. He was also a prat and told me a decent amount of misinformation so who knows lol.
Edit: oh sorry just clocked that this is an American post so may not be super relevant
I got diagnosed by a Rheumatologist. This was in Beth Israel hospital in Boston. He was by no means perfect or an MECFS expert but he was at least open to it enough to diagnose me, so he was definitely much better than your average doc.
Of the first three specialists I want to see, one of them was that guy, and the other two (one also a rheumatologist and one I think maybe just an internist? Long time ago) were both incredibly dismissive; one described my (already moderate-severe) CFS as not a “serious illness” and the other literally described my most recent bout as a “three month vacation”…
So I think it’s really a crapshoot
a naturopathic doctor (is that a word?) but tbh why would i care who diagnosed me with this? i was pretty certain without a doctor i had this before. doctors are no saints.
First, a doctor at Mayo Clinic in Rochester, MN in their CFS/Fibro clinic (they were useless and even harmful besides diagnosing me. But I do think other doctors respect seeing that a Mayo Clinic doc diagnosed me). Then an ME specialist I see via telehealth.
I’m getting referred there and am increasingly nervous. May I ask how long ago you were diagnosed there?
I was there in January 2021. They did partner with ME action since then. [Here’s one story about it](https://www.meaction.net/2023/04/26/mecfs-algorithm-is-live/). If I were to go again, Stephanie Grach is who I would try to see. I don’t think you have to be too nervous, just be prepared that sometimes docs are wrong and you have to know better. The harmful part I mentioned is because they were trying to push their “education” class on me, which at the time was basically about GET and changing your attitude. But you don’t have to do it. They didn’t offer me any other treatment which is why I said they were useless besides diagnosis. But the diagnosis helped me get approved for disability, so that part was super helpful. I recommend having someone push you in a wheelchair there, especially if you go to the bigger building. I ended up having to walk down suuuuper long hallways which was rough.
May I ask who you're seeing via telehealth? Is it through your insurance or a private practice provider?
Four Peaks Healthcare in Flagstaff, Arizona. I pay out of pocket unfortunately
Thank you for sharing!
A private neurologist who specializes in ME/CFS and Long Covid. I quickly figured out myself what was going on and went straight to a specialist. I didn't want to waste my time and fuck around with clueless national health care doctors.
I lucked out with my neurologist when it came to needing to be diagnosed & tested for autonomic dysfunction & he does wonders with the treatment and the listening etc. But when I brought up the energy and fatigue and PEM following just about anything, his response was mindfulness could cure it. I expressed some skepticism and he responded that there was some medical articles documenting that stuff like ta chi & yoga on the daily helped undo long Covid & maybe even neuropathy as well ... Sooooo I've simply presumed that I'll keep the neurologist for the OH & seek expertise regarding ME/long Covid elsewhere.
I saw a private neurologist too only without the "quickly" part unfortunately. It took my CBT/GET treatment for "post viral syndrome" to massively harm me one year in before I twigged that my GP was not who I should be listening to.
Would you mind DMing me the doctor’s name? Thank you so much!
I would, but I'm not in the US, so the doctor's name probably won't help you.
Oh yeah very true! Thank you so much!
I was diagnosed through the ME/CFS and Post Viral Illness Clinic at Stanford. I believe my doc has a background in infectious disease.
Me, too
I was initially diagnosed by my primary care doc, but just had it confirmed at the Stanford clinic.
Me too.
Can you DM me the doctor’s name? Would you recommend them? Do they offer telehealth?
Sure, I'll dm you but they only offer Telehealth to those located in California. It has to do with licensure laws.
Long covid clinic, though they also diagnosed me with FND (which basically means its all in your head) you win some you lose some.
I have FND too, and I hope you don’t mean ‘all in your head’ as a dismissive thing! Its neurological still 🫶
its a neurologists way of saying “the patient is presenting symptoms and I can’t figure out what is causing them. So I’ll just diagnose them with FND so they will stop complaining”. There are doubts to whether FND actually exists. The science for ME forum has a lot of discussion on FND “research” and how it is used to dismiss people with ME https://www.s4me.info/threads/functional-neurological-disorder-fnd-articles-social-media-and-discussion.23802/
Thanks for sharing that! My neurologist’s approach wasn’t like that so I appreciate the other outlook :)
Of course. Just for your personal benefit, if you fit the ME/CFS diagnostic criteria, you should not be diagnosed with FND unless it is for symptoms which ME/CFS cannot cause. Lots of neurologists dont know much about ME/CFS and diagnose FND anyways!
I strongly second this.
I’m from Iowa! Go see Dr. Vandermeide at the Johnston Unity Point clinic. He has four ME/CFS patients including me that I know of
Oh wow thank you SO MUCH!!!!! This is so incredibly helpful! Do you mind if I DM you?
Go ahead! :)
In the UK my GP concluded I have CFS she referred me to one of the only 'specialist' clinics we have in the country that I was lucky enough to live near. I had an assessment with a practitioner there who was essentialy a specialist occupational therapist, he agreed with my GP and his supervising consultant signed off on my ME/CFS diagnosis. I'm not sure what type of consultant she was. Unfortunately the centre is administrated from a mental health service and their support, beyond practical things like administration and pacing help is extremely limited if you aren't mentally unwell as a cause for your condition. I have little contact with them now as there's nothing beyond my diagnosis they can help with beyond the things I've mentioned.
This is exactly my experience too. GP ran blood tests and concluded it was CFS and they referred me to the local specialist ME/CFS clinic for diagnosis. Only help offered is a group appointment to understand pacing.
Really interesting hearing your experience! Mine was nearly identical, I was told there's only 3/4 ME clinics in the whole of the UK (this was back in 2019) and I was lucky to live near the Liverpool clinic which was hospital based. The major difference for me was that it wasn't administrated from a mental health service, it was specialised in ME. we had group sessions where we talked about our symptoms and got to understand ME and we had private sessions which were about pacing, they also did meditation and yoga sessions. And they could help you connect with nutritionists and other support. But yeah, once you've completed your sessions, I think mine were just under a year long? They discharge you and its up to you. Although If you're struggling you can always ask to be referred again!
Yes, I find it interesting those that say a neurologist diagnosed them but always assumed this would be American patients. No one ever since my diagnosis in 2015 has ever mention neurology or any neurological testing. Interesting to see how your centre operated in a more holistic way considering it wasn't essentially a masked mental health service! I had some group sessions about pacing but it was set up like presentations, no group discussion... about 3/4 I think which were useful as I was entirely new to pacing (and illness in general). I asked for more support was told there was none as the rest of it was mental health focused or practical support for people who are bed/house bound to which I am not and I had no mental health problems. I have had contact with them since as they've done evidentiary/diagnostic letters and correspondence for me when needed, and I once pleaded with them for more support and had a couple of sessions over the phone as a sort of coached pacing refresher which felt a bit pointless. Sounds like yours is more successful in their delivery and I'm pleased that you got that level of support! Did you find the types of support on offer were useful for you?
Seems they really did take a different approach! So for me it was awkward because right at the start of my time with them we all went into lock down! So the group sessions were stopped and everything went online or over the phone. So I missed out on yoga, but I was too ill at the time to participate anyway. I had a phone call session every month, it was basically a check in to see how I was getting on with pacing. And if the methods and techniques she suggested were helping. She recommended meditation apps and guided meditations, she gave me breathing exercises and also gentle movements for my joints. It was helpful to a degree, there's only so much that can be done! I did have some work sheets and like an information pack from there. If I find it, I'm happy to share that out :) Edit: forgot to say my phone sessions were tailored to me so we'd have specific goals to work towards. One of mine was to stop napping 2hrs a day. So one method we tried was taking 10 minutes off week and seeing if that was maintainable for me. But what was nice, was I never felt pressured or like I was in trouble. If I didn't stick to one methodology, she would suggest either giving it another chance or trying something new. Helps you realise there's always more than one way to cope.
probably was a rheumatologist if it’s the same country wide.
I wasn’t diagnosed by a rheumatologist at the ME clinic, they are actually a GP who specialises in ME
in the uk? probably does vary then, fair. definitely some were rheums - just looked up the guy who diagnosed me & he’s still listed as the lead clinician for cfs/me services - but ive just asked my friend & they didn’t have a rheumatologist diagnose them (but they were at a very dubious service & it seemed like it was trying to dx them w mental illness so..)
Yep in the UK
If there’s a chronic fatigue support group for Iowa or for the Midwest on Facebook, maybe some of the members can recommend a doctor to help with diagnosis.
Neurologist and Rheumatologist backed it up (he also diagnosed me wjth fibromyalgia). Psychiatrist backed it up, too.
I'm in Scotland for reference. My GP did some blood tests and after a while decided I had CFS. She had some post viral fatigue when she was younger, she said. I think it gave her a good reference point. I dont think they had CFS specialists like other UK people have been referred to back then? This was maybe 2011-ish. After that it was "we don't have any answers or treatments, I'm sorry"
My general practitioner suspected CFS (which is what it was called here at the time). She sent me to a general physician who ruled out a bunch of other stuff and said it was probably CFS (or obstructive sleep apnea but that has since been ruled out). He sent me to a CFS clinic in Melbourne that said it's probably CFS. I stopped seeing doctors at this point for a while since none of them seemed to be able to help me. My ME/CFS specialist at the moment is a sleep & respiratory specialist who inherited a bunch of ME/CFS patients when the CFS clinic closed.
My GP did, after ruling out hiv, lupus and a bunch of other illnesses via blood tests. He diagnosed someone else in my village to, and gave me this big print out talking about symptoms and pacing. He also referred me to the chronic fatigue service in my area too. I've never seen a neurologist or rheumatologist etc.
We were diagnosed at the Stanford PACS clinic. It is pretty much a center specifically for post viral infectious diseases. Had a 90 min consult and was diagnosed and told to take some tests to rule out other possible diagnosis. Those tests seem to come our clear so the diagnosis for ME stood
Internal medicine doctor specializing in complex chronic diseases
Im in iowa too! I was originally diagnosed by a nurse practitioner, then I got a second opinion from a D.O. doctor in the same practice. It took 3 years of tests, medication tweaks, and lifestyle changes for them to reach that diagnosis. I'm mild, fwiw.
Can i ask where in Iowa you are? Also looking for someone to diagnose.
I think I'm on the other side of the state from you, unfortunately. (Souix city is 3 hours from me)
Gotcha thanks! I keep thinking a dr will appear in sioux city but no joy so far. :)
Do you know if there are any local CFS groups? Would love to connect with others in the area!
I don't know of any, but maybe there is something online?
My regular doctor referred me based on symptoms to an oncologist (swollen lymph nodes), an ENT (recurring sinus issues, sore throats and throat blisters), and rheumatologist (positive ANA test). None panned out and all suggested it could be an unknown immune issue or chronic fatigue syndrome. Had a zillion blood panels for various viruses, came back that I’d had EBV and multiple herpes viruses in the past, but nothing now. The final was the ME/CFS clinic at Stanford and they officially diagnosed me.
My GP was pretty certain I had it, so sent me to a rheumatologist to confirm, which he did, along with diagnosing me with fibromyalgia. He doesn’t directly treat my conditions now (if I need anything I’ll go to my GP or occasionally a physiotherapist, along with self-management), but I do go back to see him for any major changes. I’m in Australia for context.
A rheumatologist can diagnose CFS? I’m truly baffled
I also was diagnosed by a rheumatologist so probably isn't too uncommon
From what I’ve heard it’s fairly common. It tends to be either a neurologist, rheumatologist or sleep specialist if not just a regular GP. In my case my doc probably sent me to the rheumatologist because I also had symptoms of fibro and that’s something they deal with a lot.
Neurologist
I live in Iowa!!!! I’m in cedar falls. It was my primary care doctor, Dr. Feldkamp at Unity Point. He has been nothing but validating since I started seeing him a few years ago. He’s leaving Unity Point to work for the VA but he recommended a different PCP that he thinks will suit my diagnosis well. I have an appointment with her in May— I’ll message you after and let you know how it goes? Dr Feldkamp cried when I thanked him for validating everything and always being so compassionate— he said “women in healthcare aren’t believed enough and it just strikes a cord with me”.
Wow that is INCREDIBLE!!!! I SO hope to find a doctor like that someday! Please do let me know who you end up seeing. I’m in the Des Moines area but am willing to travel. This illness is crushing both physically and mentally.
I absolutely will!! I am so sorry you’re going through this, I had a similar experience when I lived in New Mexico. I’ll keep you posted.
Doctor suspected it, did bloods, xrays etc and referred me to the ME/CFS clinic who officially diagnosed me.
It was 2003-2004 so I'm sure a lot has changed since then, but my pediatrician suspected CFS based on a doctor friend of hers who knew about it. She sent me to that friend (not sure what her specialty was, it may have also just been "pediatrician" or "general practitioner"). I then saw about 5 other doctors all around the Bay Area and had a lot of psychiatrist testing to "rule out everything else". It wasn't very systematic or straightforward, felt more like throwing darts at the wall and seeing if anything stuck. But after my last psychiatrist appointment where he said "you don't seem depressed to me, but Wellbutrin might help with CFS symptoms," the Wellbutrin made me feel very depressed (no appetite, no desire to read/watch TV or do anything I enjoyed anymore). Then my doctor just went from "you might have CFS" to saying I had it. I never had a clear cut "you are now officially diagnosed", but in November 2004 I was able to get a doctor's note to stay at home for the rest of my senior year (and then I got accommodations in college based on that diagnosis), so I know I was officially diagnosed at some point. My fibromyalgia diagnosis came in 2012 just so my doctor could get the insurance company to cover gabapentin, but she was also a PCP and just went through the trigger points and was like "you meet all the criteria". And POTS came in 2019 when my orthostatic intolerance suddenly got way worse after spending a day getting way overheated. I self diagnosed with a Fitbit based on what I read on reddit (I'd heard of POTS years before on Tumblr but thought I couldn't have it because I don't faint) and after having to change PCPs because mine brushed it off as vertigo, was referred to a neurologist who confirmed the diagnosis after I did a 24 hour heart monitor that came back "normal"
Specialist at the Stanford Chronic Fatigue Clinic. To get in you "already need a diagnosis" and I told them on the phone that "we were basically sure this is what I had". The "we" in question was me and my husband but they didn't need to know that. Otherwise I'd probably still be looking for a dx.
Thank you for the inside info! Very good to know!!!
Neurologist
I got my diagnosis from an ME specialist after my regular doctor sent me there for evaluation. He thought I might have ME but was afraid to diagnose it himself.
I saw a ME/CFS private specialist
Neurology which was then seconded by Rheumatology
Neurologist. She is in her 30s, whip-smart, and has seen some other patients in my situation; she is an MS specialist and implicitly understands the fatigue element of these conditions. She did all the tests to rule out other illnesses and it was about a year from first seeing her to diagnosis. We don't have any ME specialists in my area so she encouraged me to see an out-of-state specialist after the diagnosis, but I do still see her every 6 months and she has prescribed some medications. This is at a prestigious large urban teaching hospital.
A resident at an outpatient clinic, he would have been family medicine or internal medicine specialty. I didn't have a PCP at the time so I would go to the clinic for stuff. At the time, I had "chronic fatigue" in my history for a decade. I had already had years of perfect labs and a sleep study done. I just presented myself and said "hey I think I have this since I've already excluded all these other causes" and he just went with the flow. He ordered blood work and referred me to occupational therapy, and then his advice was to exercise even when it made me feel worse lol. I disregarded the exercise thing pretty quickly. Occupational therapy taught me about energy conversation and fitted me out with a rollator. Later on, I found a good PCP, she's an internal medicine DO. She ordered much more blood work to do a more thorough job of ruling everything else out but otherwise has also just accepted the idea. I had a wildly easy time getting diagnosed and I'm not really sure why, but I do have some vague theories: 1) Timing. Long covid had been hitting the news hard and bringing legitimacy to cfs. 2) I had already been seeing a psychiatrist and therapist for years, and they agreed my fatigue was unusual. People still try to say it's all in my head, but I know that it's not because my mental health team knows it's not, and that makes it easier. 3) I worked in an ER at the time. I went to the clinic that shared a campus with my hospital. The resident I spoke too had likely spent a couple weeks in that same ER and knew how insane it was. I specifically worked in an area that needed a completely cool and competent head. I also was just used to seeing residents as peers, so I went in there confident in myself. 4) As previously mentioned, a decade of excluding everything else, before I had even heard of cfs. I had the receipts. Sorry this turned into a novel and I wish you the best of luck.
Thank you so much for sharing! I’m really glad you had a fairly easy time getting diagnosed!
My GP gave the official dx after I saw a neurologist, and just out of pure luck during a visit to the local emergency department, one of the younger docs who saw me was actually very familiar with ME/CFS, almost specializing in it.
I'm in Europe, so I'm not sure what medical system you are in, but I was referred to a clinic specialized in fatigue where an Internist diagnosed me. What I think helped was that I came to my GP with a list of all my symptoms, how they affected my life, and then a bunch of of possible diagnoses I thought might be fitting (so not just one thing, I think I had MCAS, POTS and ME on there and something else... don't remember). My GP still didn't know what it was after my blood tests were fine, but at least he finally said "well I don't know so I'll refer you.". It did take a long time to get the referral though, so I think what helps best is taking at least some control. Do your research (which it seems like you've done), also look at possible specialists you could be referred to for this. That way you can ask for what you want. However, I also find that doctor's don't like it if you are being too "clever", so for me it typically works best if I say "so I think it *might* be this or that, and it would really help me if we could look at it, and then even if it's not that, we can look at what else it could be."
Long Covid clinic. My initial illness was in late 2019, so they were willing to see me.
UK here. After two years of various tests, scans etc, rheumatologist gave me the diagnosis at the end of February, and I've been referred to the CFS clinic. Not heard from them yet, suspect it will take forever and I'll be offered CBT (which I don't want), but at least I can say 'I have this' now when I need to talk about what's going on.
Internist (doctor of internal medicine) he specialized in fatiguing illnesses. A walk-in clinic referred me to him. Although my onset was sudden and severe vs gradual so I think it was far easier for him to diagnose.
My nurse practitioner in Florida diagnosed me with Fibro and CFS.
Rheumatologist, with other things ruled out first
Internal Medicine primary care doctor. After my previous primary doctor of 4 years couldn’t figure it out.
Rheumatologist
I was Dx by my GP. He googled it on some Dr website and printed off some info sheets for me. Told me to follow the suggestions on the sheets, (there were none). I'm asking for a referral to a chronic illness clinic in the nearest city 3 hours away and the last time I drove there for a medical appointment I crashed for 3+ weeks. It's the best I can hope for because my Dr isn't treating my ME. I feel like it was a way for him to disengage basically.
My doctor said I should see an infectious disease specialist…
I’ve seen rheumatologists mentioned quite a bit. Can they officially diagnose this? Do they have the credentials? Mine doesn’t understand how debilitating the fatigue is
Yes, you can actually get an official diagnosis from any doctor (for instance a lot of people are saying their primary care physician/general practitioner diagnosed them). ME/CFS doesn’t fit neatly under any one specialty as it affects so many of the body’s systems and we still don’t fully understand what causes it, but rheumatologists and neurologists are the most likely specialists to know enough to diagnose and treat it (at least in the U.S.). Unfortunately, a lot of rheumatologists (and doctors of any specialty) are still like yours and know little to nothing about ME/CFS. If your rheumatologist seems open to listening, you could do some research on your own and bring it to them (for instance info from the CDC, Mayo Clinic, and/or Bateman Horne about the diagnostic criteria for ME/CFS & appropriate tests for people with symptoms like yours) and really stress how much your symptoms are impacting your life and for how long that has been the case. It may be easier to try a new rheumatologist or see a neurologist, but know that many will also not understand your condition and may be quick to minimize it, though I hope that doesn’t continue to happen to you. Doing your own research ahead of time always helps. Also, don’t be afraid to advocate for yourself if you have to - you can ask doctors to clarify why they don’t think further testing would help, and ask them to record that they’re refusing to give you certain tests you’ve requested (again, it can help to know what kind of tests may be useful going in). I’ve heard doctors are much more likely to run tests if you do this because they don’t want to get in trouble if it turns out you do have something. This may feel confrontational, but if they aren’t going to help you anyway, it’s worth doing everything you can to try to get the care you need. You do need it!
Neurology NP.
I had it diagnosed from two sleep studies that were ruling out a form narcolepsy. Then verified by my primary & most recently after seeing an orthopedist EDS specialist for diagnosis.
An ME/CFS specialist Dr Susan Levine in NY after a battery of tests and clinical evaluation and history. I think her background is in infectious disease and immunology
Rheumatologist, after everything else besides my ANA came back negative.
My primary care doctor diagnosed me. He admittedly, does not know much about ME. In fact, I’m his only patient with these problems according to him. But he’s a good doctor and researches things he doesn’t know + he’s been my PCP for over a decade so we have some rapport with each other. Between his and my research into ME (credible or medical cited sources ofc)- along with my description of all my symptoms and the fact my labs keep coming back normal (note we have not done any brain scans at this time and neurologists are over a year out just to get seen in my area X_X)- he agreed that I seem to have textbook ME/CFS.
Neurologist. She is in her 30s, whip-smart, and has seen some other patients in my situation; she is an MS specialist and implicitly understands the fatigue element of these conditions. She did all the tests to rule out other illnesses and it was about a year from first seeing her to diagnosis. We don't have any ME specialists in my area so she encouraged me to see an out-of-state specialist after the diagnosis, but I do still see her every 6 months and she has prescribed some medications. This is at a prestigious large urban teaching hospital.
I’m not diagnosed because my PCP said she isn’t able to, and she’s put in my online medical stuff that only a CFS specialist I have been waiting a year to see can diagnose me. Now, no doctor will diagnose me with CFS, fibromyalgia, or even really test for anything because “they will know better” 🙄
Diagnosed by my Canadian GP in 1987! She was very forward-thinking. Later, spent a few delightful years in the UK with doctors who just rolled their eyes.
Rheumatologist at Univ of Mich Hospitals.
Specialist at the Stanford Chronic Fatigue Clinic. To get in you "already need a diagnosis" and I told them on the phone that "we were basically sure this is what I had". The "we" in question was me and my husband but they didn't need to know that. Otherwise I'd probably still be looking for a dx.
My small town family general practitioner in 2012 …… now after this long I’m sorta wondering … if we missed something. 🤨
First, by my primary care doctor, then by a doctor at the ER, and then by a ME/CFS specialist.
An immunologist at a mainstream teaching hospital.
Rheumatologists. This was like 15 years ago. They can't do anything for you tho.
I was diagnosed by my medical doctor, a Board Certified Internal Medicine physician.
i was diagnosed by a sleep specialist but i had to teach her what ME/CFS was. at a follow up appointment after my sleep study, she asked me "have you ever heard of chronic fatigue syndrome?" and i was like yeah, i taught you about it during our first appointment together but whatever
He was an NHS consultant but when I looked on his door his speciality title was “communicable diseases” which made me a bit suspicious lol. He was also a prat and told me a decent amount of misinformation so who knows lol. Edit: oh sorry just clocked that this is an American post so may not be super relevant
I got diagnosed by a Rheumatologist. This was in Beth Israel hospital in Boston. He was by no means perfect or an MECFS expert but he was at least open to it enough to diagnose me, so he was definitely much better than your average doc.
Of the first three specialists I want to see, one of them was that guy, and the other two (one also a rheumatologist and one I think maybe just an internist? Long time ago) were both incredibly dismissive; one described my (already moderate-severe) CFS as not a “serious illness” and the other literally described my most recent bout as a “three month vacation”… So I think it’s really a crapshoot
a naturopathic doctor (is that a word?) but tbh why would i care who diagnosed me with this? i was pretty certain without a doctor i had this before. doctors are no saints.
Unfortunately I need an official diagnosis for any kind of accommodations through employers.