I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes in my chart, he sat down to review my information. He started with the list of diagnoses.
“Family history of breast cancer . . .” He looked at me. I nodded.
“Chronic fatigue . . . ” He looked at me again. “You don’t look tired.” I just blinked.
“Facial flushing . . . but you don’t look flushed.” He finished the list. “Look, I just made some of these go away!” he crowed.
“If only you could do that in real life,” I retorted.
It has been years since a healthcare provider said “you don’t look tired” to me. This may be due to the fact that I have a core of providers who understand ME/CFS, and when I’ve needed new consultations as issues have emerged, I rely on those core doctors to recommend the new ones. This is the first time where the person recommended to me was on sabbatical, and I had to see the doctor covering for him.
When he said “you don’t look tired,” I basically froze. I really couldn’t believe what I was hearing. I don’t expect every doctor to have read the IOM report, or to recognize that comments about looking or feeling tired contribute to stigmatization and trivialization. But this doctor’s cavalier and snarky comment that I don’t look tired felt like a cold slap in the face.
I tried to banter with him for the rest of the appointment, joking with him and also asking pointed questions. When he asked why I have a cane, I explained that I use it for stability as I get tired and weak and that it also prevents people from insulting me when I use my disabled parking placard. He expressed surprise, so I told him that people have told me that I don’t look disabled and it’s only an hour afterwards that I come up with the snappy comeback “You don’t look stupid.” He thought that was hilarious, and apparently failed to make the connection with his own “you don’t look tired” comment.
The appointment was unsatisfactory for a number of reasons, but I spent a great deal of time afterwards beating myself up. I kept thinking that I should have pushed back on the “tired” comment. I should have educated him. What if he encounters another patient with CFS on his or her chart? And I felt unheard, stigmatized and insulted.
My husband had a much more succinct reaction. He said, “F*** that guy. It’s not your job to educate doctors. He’s an idiot and so we’ll find you someone else. F*** that guy.”
He’s right. There’s no point in agonizing over this doctor and his ignorance. My responsibility is to myself and my own health. It is not worth the energy to try and educate this doctor, and it probably wouldn’t help anyway. This doctor wasn’t open to new information coming from a patient like me. He didn’t see me as an equal, or someone who might have knowledge that he does not. Better to cut my losses and move on.
For so long, we have born the burden of educating healthcare providers because the institutions that usually do that have failed to put accurate and useful information in their hands. That’s one reason why the IOM report recommended that the Department of Health and Human Services revise its educational materials (an effort that is currently underway at CDC).
But it shouldn’t be this way. We deserve respect and knowledgeable healthcare providers. We deserve doctors who are willing to learn, and who treat our experiences as valuable data.
So you think I don’t look tired? Cue the epic eye roll.
Great post! Even my own specialist sometimes doesn’t understand. Thank you for your spot-on comments!
Dear Jennie,
Thanks for your for your post. I can relate to to your experience with the Demi-God’s. Where do you reside? I reside in Michigan. No physician has treated my CMV, EBV and HHV6 for the past four year’s. I suffer from numerous other illnesses’ and it’s HELL on Earth twenty-four seven.
John R
I’m so sorry that you have trouble getting care. I’m in PA and finding knowledgeable providers is a challenge.
Jennie, So sorry you had to go through that with your new doctor. You’re right, we shouldn’t have to train our doctors to understand our diseases. Thank you for sharing with us. Big hug to you, Sabrina.
And we’ll never get an apology, even after they have a diagnostic test and a cure.
People are idiots. Doctors are people. You do the math.
And don’t waste any of your spoons on them.
The problem is they ALSO don’t treat you properly (as in medical treatment), because they have no idea who you are as a patient.
I’ve given up.
I write instead, hoping some people (maybe even doctors) will read Pride’s Children: PURGATORY with its CFS heroine, and have this snuck into their brains and under their skins as they read something that is also a good story (she says modestly). I have enough work managing the Kindle Countdown deal I just started, and trying to write Book 2.
I avoid even going to doctors unless absolutely necessary. And then, like you, like all of us, try to stay with those I’ve already educated a bit. It’s a losing battle.
I’m sorry this happened. It makes me angry. But…Bravo to David and Brava to you for seeing what the best next step is.
Oh, I can so relate. This last month, with new hip pain, I headed to a chiropractor. When I told him I’d been pretty much home bound and bedridden much of the last 6 months that did not stop him from telling me that exercise would really help me. When I said I can’t, it makes me sicker, he told I should work to get over my (mental) blocks about exercising. I told him he was mistaken, but he pushed back. I let it slide, eager to just get the chiropractic help. But when he later told me he loved getting his patients “back to doing what they love to do — exercise, hike…” I told him he’d better stop talking about that unless he wanted me to cry, that I’d love to be able to do those things again, but haven’t been able to for decades. (I really was on the verge of crying, because I was so weak. It had taken ALL I had just to get to that freaking appt.) The next time I saw him, when I asked how he was, just to be kind, he told me all about his great work outs and how much he loves working out, that he had just come from working out, etc. ::Sigh:: Like you, I told my husband about how utterly tone deaf this practitioner was, and how obligated I felt to educate him, especially since he was working deep in Tick Central, deep in Lyme Epidemic country (rural New England). I had already tried, verbally, but thought that maybe now I should come back with some studies, printed out, to show him. My husband told me to let it go, to pick my battles. But I thought about all the ME and lyme patients who could come after me, and how they’d feel in the face of his ignorance. However, in the end, I, too, like you, just let it slide. I am honestly too wiped out to take on yet another pathetic practitioner. In the past, I have tried to educate doctors. Take the head of Infectious Disease at one of the most prestigious hospitals in Boston, and thus the world. He told me, “You know the one thing that we know helps CFS? Graded exercise.” I told him that was not true, and thus the head butting and attempts at education began. After I realized it was futile, I left.
Oh UGH, Rivka. I so identify with your experience. It’s so hard to be told you should do the things you desperately want to do. Like telling a paralyzed person to walk.
I’m so sorry that many of us are still experiencing this insult from doctors after all these years. “We shouldn’t have to train our doctors” is a phrase I have used very often over the years, sometimes in desperation and sometimes with bitterness. Of course we shouldn’t have to, however, that may very well be our reality for the foreseeable future. If we don’t, who will? Some have definitely been worth taking the time to educate and have become wonderful allies on my healthcare team. Others will never hear what they need to hear so I have walked away from them. We do need to pick our battles carefully so as not to waste energy on those who will not hear but still be willing to educate those who are open to learning about this illness.
Paired with the snort of derision.
Yes! An epic snort of derision!
I have had many, many visits to different doctors over the years for complete exhaustion and PEM from ME/CFS. Most don’t understand. They order a thyroid test, test for anemia and since those test come back within normal range, they pronounce me “depressed.” Exhaustion has been my main problem for most of my adult life.
Then I had a loss of vision in part of my field of vision. I went to the doctor and was SHOCKED that I was actually taken serious (after being blown off so many times).
It turned out to be retinoschisis (a separation in the layers of the retina), followed by retinal detachment. This type of eye condition is more common amongst those of us who have Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome.
But the main point here is we shouldn’t be shocked because of being taken seriously. We should be believed, understood and taken seriously at every office visit.
“It’s not your job to educate doctors. He’s an idiot and so we’ll find you someone else.”
I completely agree! Trying to individually train each doctor about ME/CFS is definitely a losing battle. Not to mention that so many patients are just barely able to survive daily activities of life – no extra spoons for this battle.
Putting our efforts into ME/CFS advocacy work that aims to reform medical schools, and have med schools teach doctors about ME/CFS, would be a much better use of patients time and energy. I don’t know how to make something like this happen but it’s high on my list of priorities.
Heck, I’ve run into at least half a dozen doctors who don’t even known anything about dysautonomia. And even after they’ve asked me, “Orthostatic Intolerance? What’s that?” they won’t read the patient handout that I’ve brought with me to the appointment. It’s sad.
PS. Kudos to your husband for saying the perfect thing! I wish all patients had a supportive, loving partner to help them with these battles. I am so grateful for all the support I get from my own husband.
PS. I should mention that the two doctors I see most often, primary care physician and cardiologist, are both very supportive. I bring them research info from time to time (not a huge amount, and not too often) and they are always appreciative.
With other doctors I will try to offer them information once only. If they won’t take it then I find another doctor.
I’m sorry you had that experience Jennie but I hope you’ve been able to let it go. A couple years ago I had a bad experience with a PA at my PCP’s office – talk about rude and unprofessional, but I ended up being more mad at myself for letting it upset me all day. John R, I recently went to Stanford to get viral loads done and EBV, HHV6 are very high, and Early Antigen EBV, which indicates a reactivated infection, is high. I had never really discussed with my PCP much about my CFIDS but opened up to her when we were going over the labs, and she was very sympathetic and said her mom has a friend who was very active and engaged in life and now can’t do anything. But, she told me that although she was very sorry I have the high titers, she doesn’t know what to do with it. She said she even quit testing for Early Antigen EBV because she never saw a correlation between the results and how someone felt. Stanford put me on an anti-viral which she’s ok with and says it can’t hurt, but says that unless a virus in replicating that an anti-viral won’t work, giving the example that tamiflu needs to be given in the first day or two. There’s just so much confusion and controversy surrounding the viral aspect I’m not surprised you’re having trouble finding a doctor who will work with you. It’s too bad we lost Dr. Lerner as I think he was in Michigan. So far, I only feel worse on the anti-viral. Hang in there.
J Rae, with a retinal detachment, I’m sure glad that doc took you seriously.
Up-to-date Information for health care professionals dealing with patients who have ME/CFS.
Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET)
These commonly recommended treatments are based on the psychosocial model of this illness, which states that patients are simply suffering from the false belief that they have a serious physical disease in which exercise will make them worse. CBT is used to change these beliefs, and GET is used to induce the patient to increase physical activity, which is given as the goal of treatment.
The trial which is used in support of the safety and effectiveness of these treatments is the PACE Trial, first reported in 2011:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
The design and reported outcomes of this trial are under heavy international criticism at the moment, for example:
http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
More importantly, the report of the US Institute of Health, BEYOND MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, Redefining an Illness,
http://www.ncbi.nlm.nih.gov/pubmed/25695122
is unequivocal that this is not a ‘psychogenic’ disorder.
This is from page 5:
‘The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”’
At the end of page 2 and the beginning of page 3, the report refers to ‘the misconception that it is a psychogenic illness or even a figment of the patient’s imagination’. A few lines further down in the same paragraph, it refers to ‘delays in diagnosis or to misdiagnosis of a psychological problem.’
At the end of that paragraph the last sentence refers to doctors ‘who often subject them to treatment strategies that exacerbate their symptoms.’. (This is undoubtedly a reference to CBT and GET.)
The beginning of the next paragraph refers to ‘significant impairment and disability’
These quotations make clear that the committee confirm that this is a seriously disabling disease, not a psychiatric disorder.
Furthermore:
The last sentence before Recommendation 4:
‘”Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.’
‘Recommendation 4: The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.’
These are on Page 11 of the Summary. and are set out on pp 227-8.
Note that ‘exertion of any sort….may adversely affect these patients in many organ systems.’. This is a clear statement that the imposition of any form of exertion can do extensive, multisystem damage.
The Report thus affirms that theoretical basis of CBT is false, and that GET is a treatment which can cause systemic damage. This supports the information provided by the majority of patients, that following a program of increasing exertion when mildly or moderately ill has resulted, sometimes after a brief period of apparent improvement, in a severe and long- lasting worsening of their illness, permanent total disability and intractable pain.
This would suggest that the original treatment recommendations,, for complete rest from the inception, followed by a lifestyle adapted to the conservation of exertion would be more likely to result in improvement.
Nancy Blake
Author, ‘Ramsay’s Disease’, ‘A Beginner’s Guide to ME/CFS’
It’s not our job to educate professionals, but I’ve produced a succinct, referenced little sheet which I thought might be a useful thing to shove in front of them as you go out the door. Who knows, some might welcome a bit of information about a recommendation that might actually be helpful.
Some of you may also be interested in my article:
http://www.positivehealth.com/article/cfs-me/lost-in-translation-the-me-polio-connection-and-the-dangers-of-exercise
Whew! I sympathize but as they say, “Don’t let the turkeys get you down!”
It’s ridiculous what some “doctors” who do not know a darn thing and will
not admit it.
Should we all carry around the IOM report (or its summary) with us to
every medical appointment?
Your husband has the right attitude and how great that you have a
supportive spouse.
My doctor is nearly 80 and I live in terror that he’ll retire. He’s been
my doctor since before I got this disease in 1985 and he understands it.
And who would I go to? And I refuse to educate any doctor on this
disease. I, too, would have to use all my energy to get to the appointment.
When I fell and broke my arm on the sidewalk two years ago, I was
too tired to go to an ER because I couldn’t have filled out forms then
nor answered many questions. When I thought of my complicated
medical history, I knew I couldn’t explain it. So I waited a few days
until I wasn’t as tired to get my arm x-rayed.
Anyway, my dread fear is that my doctor retires and I won’ t be
able to get medications that help me survive.
Yes — I DO think it’s a great idea to carry around the IOM summary around with us. And AFTER you’ve dealt with the reason for your visit, as you leave, simply offer it to those who already “get it” (Group 1) as an update -” FYI, here’s the latest gov-commissioned report, if you are interested.”
And even with those like the one Jennie had the misfortune to meet, I agree it’s best to move on — too many spoons to be worth your precious energy — plus their bias could cause them to dismiss potentially important problems.
However, if they’ve actively ignored or dismissed your symptoms and/or suggest the “evil” PACE version of CBT/GET (Group 2), I would suggest handling it this way: calmly & politely, you also leave them a copy of the IOM summary (and perhaps the IACFS/ME Primer), along with the words, “if you’re interested, here is the latest medical update on this disease — the gov commissioned the IOM (new name now??) for $1 mill to produce this review of thousands of medical studies — it’s clearly stated the disease is physiological, not psychological — and GET & CBT have been thoroughly debunked in this disease — in fact, they are HARMFUL.” Maybe throw in a copy of David Tuller’s article.
This can be really brief, as you gather your things to leave. You’re not invested in their response (Group 2’s). If you’re moving on anyway, hopefully you never have to see them again. If you must see them again, you’ve said nothing rude — you’re just politely giving them the latest info for their info.
If they “file it” in the trash after you leave, fine. It cost a few pennies to print it for them, so there’s little lost & then you’ve at least done the bare minimum (for your conscience!).
If you can barely make it to the appt as it is, and the stress of handing them papers is too much for you (which it CAN be), then I agree — by all means just walk out.?
Excellent, articulate post, Jennie — thank you!
The STAT article is a really scholarly dismissal of PACE by a trained statician…we’ve been trying so hard to get the PACE authors to release the raw data for re-analysis, and they have even tried to get a special clause into a copyright law, exempting their whole 10-year program from FOIA requests, but Tom Kindlon, David Tuller and the author os the STAT article do a fine job with the data that is available.
Jennie,
Like you, I am on the CDC’s Technical Development Workgroup. For those not familiar with this, it is a group of 58 patients, advocates, experts, HHS employees, and representatives from medical associations convened by the CDC. The purpose of the TDW is to recommend new educational materials to the CDC for medical professionals, patients/families, and the public. There is a survey we participants are to fill out this week. One question is, “What do you think clinicians need to know about ME/CFS?” I am going to attach this “Epic Eye Roll” link to my long answer, because everyone’s comments so clearly shout out WHAT THE DOCTORS NEED TO KNOW, DAMMIT.
In addition, may I suggest when any of you see a new doctor, that you come into the appointment ready to face the kinds of ignorance illustrated here and have ready answers, and go with some materials – printing out the IOM Report Guide for Clinicians, for instance. And if you have the strength, do not let them get away with insulting behavior should they say such dumb and ignorant things. They wouldn’t say such things to a cancer patient! Their not knowing about a disease does not equate to its not being real, although that is the basis for this kind of thinking.
You know what, the spouse’s should go in and teach those physicians a few lessons. One that you were made worse going to doctor’s appointment. Now I am not talking about clocking them with a good upper cut, just a bringing them the studies and showing them a concerned spouse that sees the after affects that these visits cause.
Now my mother has done this for me during the visits , since I am too cognitively impaired to drive.
Just an idea, but possibly a needed one. If we were cancer patients that would have more immediate chance of dying early than the slower process of ME then maybe our spouses would be more desperate to fight for our care. One problem is, this is costly since the spouse would have to take off work, and would more than likely not get an appointment to talk with the doctor. Oh darn it. So not the greatest idea. But maybe we need to plan on spouses or friend, parent to attend a visit to help with this.
I know for some years, when I was capable to go on my own, I just weathered the stupid comments and the dismissive attitude when I brought out research or the International diagnostic criteria.
I know it is not our responsibility to educate, but when the government has refused and insists on educating doctors on the ineffective and potentially harmful CBT and GET treatments as a result of the fraudulent PACE Trial study, it has been dumped in our laps.
For how many years have we brought up the significant problems with the PACE Trials, and our own government researchers and doctors have remained silent OR have still promoted it just as recently at the February CDC Grand Rounds to thousands of attending medical personnel? And mind you, this was a year after the release of the IOM.
We should look after the HIV activists’ Act Up group. Even after decades of billion dollar NIH research budgets, and who knows how many billions spent in the private sector, they need to still protest. This week the activists have done a naked “stand-in” protest at a Pharma company protesting high costs. That’s right N-A-K-E-D. They do not worry about upsetting Pharma for fear of Pharma becoming disinterested in helping them or stop manufacturing the drugs because their egos are upset and being told they make decisions to contribute to more dying. We need to stop worrying about upsetting the doctors or NIH government officials when they are not doing a good enough job.
Let me say that again. They are not doing a good enough job. So they had some baby steps, not good enough. Just like the HIV activists still fighting tooth and nail to this day even after they have had a marathon of effort.
It is not good enough. And NIH is a government entity, paid for my the people. We are the ones footing the bill out of our measly disability checks, or reduced income. The NIH study needs to be fixed, RFAs approved not just talked about. PACE Trial retracted and an active effort to remove all references to it.
I have heard #FeeltheBern so much lately, I want to hear #FeeltheUrgency. [Ok that sounds weird, so maybe something else. 😉 ]
And Jennifer, please don’t take my other comment as criticism at all. I have had the exact same convos with my husband. And he had the same reaction, F@&$ him/her, find another doctor. And that is what I try to do. And why I had so much to say, my thoughts have been bubbling about this very issue. Mainly because I have run out of energy and ability to keep trying to find a doctor. The Midwest is the Arabian desert of trying to find a tall drink of water (aka understanding doctor) compared to the wateringholes found on east and west coasts. My hope is a scientific breakthrough and/or a whistleblower coming forward.
Sorry you had to go through another cruddy doc visit. 🙂
I completely understand, and didn’t take your comments as criticism at all. I had debated bringing my husband into the appointment, and it probably would have dramatically changed the dynamic.
I live in Connecticut, which I mention because as most people reading this probably know, the “Lyme” in Lyme Disease is in Connecticut. A few years ago, I asked my (older, lifelong CT resident, well-respected) primary care doctor whether he thought it would be a good idea to have a Lyme Disease test since I had more or less every symptom on the list with no other apparent cause. His response: “Well, you don’t seem like the outdoorsy type to me.” I was dumbfounded – and I wasn’t prepared to confront him about his ignorance.
If I ever get a chance to time travel . . . well, in all honesty I’d probably use it for a do-over with the boyfriend I was too immature to appreciate in my 20s – and if not, I’m going to steal your “You don’t look stupid” line.
Seriously, it sucks that you had to go through this; and no, it’s not our job to educate doctors – and lots of doctors aren’t exactly open to their patients’ educational attempts in any case. And, as a person who also has a psychiatric diagnosis, I’ve found that being confrontational never works with this kind of doctor.
This is a great reminder to be prepared – and to decide on a strategy in advance for how to respond to ignorant comments. (And if anyone reading this lives in a magical place where there are no ignorant, patronizing doctors, please let us know . . .)
All good points.
I have recently concluded that no one I know understands this disease. Friends still say things to me that boggle my mind. A neighbor whom I know well thinks I go around the city and it didn’t dawn on her that I’m mostly homebound and rarely go places.
Another friend suggested to me that I do something during the day when I had to do something that night. I said I can’t do that, I have to sleep as late as I can to do something in the evening, and then drink coffee (which I normally don’t) to get to wherever I am going, which is always nearby.
I’m sorry you had to go through that visit, and the realization once again that so many doctors know nothing about ME. I’m glad, though, that your husband is so empathic. And articulate. : )
You were not asking for suggestions about seeing doctors, and yet we all have them, more for helping the community both vent than any kind of advice for you. So please forgive that I’m chiming in on that rather than just echoing your wise husband! About ten years ago JAMA published a review study that showed that it takes seventeen years for discoveries to make it into general practice. When I remember that I feel better about having to keep educating doctors. Since then I have made various one-sheets with links to recent studies for all of my appointments, and always say at the end “of course I’ve brought some reading material as usual for some time when you’re having lunch at your desk.” This last year, as Billie Moore suggests, I take the 20-page clinician’s guide found at the IOM website to each doctor, and try to use some humor as I hand it to them “Don’t worry; this is the 20 page overview of the full 400-page report.” And then I say outloud that MECFS has been moved to the National Institute of Neurological Disorders and Stroke as I hand them the press release about that from the NIH website. That one always gets attention.
I had sinus surgery a couple of weeks ago and I was really concerned about the doctors who would be new to me not taking MECFS seriously, especially the anesthesiologist. In addition to the info I just mentioned, I printed for him and my surgeon the “To Whom It May Concern” letters from Dr. Lapp and Dr. Cheney about special needs of MECFS patients for surgery. Both doctors went over them thoroughly with me. After discussing my concerns with a woman in admissions, she also figured out that she could put those letters into the Advanced Directive part of my profile at that hospital in case I ever have to go to the ER. Of course it would be good to have and Advanced Directive on file too, but if I did there wouldn’t be a place for these cautions–which might mean I don’t need those last wishes known as soon. Knowing that ER will be safer for me is a real relief.
Carrollynn, Interesting that it takes 17 years for discoveries to make it into general practice. I like your approach with the 20 page clinicians guide — letting them know that it saves them from reading the 400 page IOM report. With your approach, you are helping shorten the 17 years down, at least for a few physicians.
Where can we get a copy of the “To Whom It May Concern” letters from Dr. Lapp and Dr. Cheney about special needs of ME/CFS patients for surgery? I could’ve used that twice this year already, and I have two more surgeries to have done in the next six months. Thanks
J. Rae I believe this link will take you to the Cheney/Lapp info you are looking for
http://www.njmecfsa.org/anesthesia/
Jennie, I am so sorry you experienced this and hope you get to the “right” doctor.
I shall never forget the new neurologist I saw for my chronic migraine.
I was also experiencing issues with falling over when I bend over (something that happens without warning). But, when I asked about it, he simply said, “You need to see a pain management doctor, not me… I do not believe in fibromyalgia. I have a degree as a nurse paralegal, so I couldn’t resist, I said, “So you are going to neglect me?” No response, bitter glare. I glared right back and said, “BTW, fibromyalgia is not a belief system”. “No worries, I will not be returning.”
I stewed over this until I concluded the only way I could let it go was to act on it. I called the office and gave the receptionist an ear full. She told me, now worries, this one will not be returning.
There are those that care. I have Hashimoto’s and have feel like I am strangling, my fatigue is at an all time high, arrhythmias, breasts tender and full, swelling, etc., and my husband is spending time with family alone. My family doctor insisted I see an endocrinologist. (Haven’t been a fan, so I quit going). But, my neighbor said hers thinks outside the box. Making a long story shorter, thyroid hormone levels went from normal on my first visit to critical on follow up. I was taken off levothyroxin have had repeated labs which are unchanged and I am undergoing more tests. So grateful to have found a “real doctor”. I asked what the game plan was and he explained it to me, then the most remarkable thing happened, he said, “Some people with hyperthyroid have extreme fatigue and weakness, and unfortunately, we still have a lot to learn about the connection with chronic fatigue and fibromyalgia.” He said, “A connection!” Well, boil me over.
Moral of the story, follow up with that doctor, the one who already knows you have ME/CFS. Get that medical care you need. I will be looking forward to hearing how you are doing. Thank you for sharing and for all you do keeping us informed.