Can You Help Me Decipher this MD Response?

[AngelM]

I messaged my primary care doctor yesterday, explained my CFS history, and asked if he could work with me or suggest a medical practitioner who could. Following is his response, which really didn’t answer my questions, and left me wondering where he stands on the issue. He included a link to a site he uses as a guide, but since I do not have a subscription to this particular medical site, I don’t know exactly what the information was that he was trying to share. Maybe someone on the forum has a subscription to this site (I had not heard of it) and can interpret it better than I. I keep running into dead ends regardless of what I do, or who I communicate with in the medical community here. Need advice!!!

Angela
I have not personally done research in this area. Definitely there are differing opinions. I have a science base article that I tried to print for you but I could not get it to work. Hopefully the link below will work for you. Try to copy it in to your browser. We can talk about this at you next appointment.

https://www.uptodate.com/contents/t...Title=1~144&usage_type=default&display_rank=1

Doc French

 

[AngelM]

https://www.uptodate.com/contents/t...Title=1~144&usage_type=default&display_rank=1

Here is the entire URL. Walters/Klewer, I think.

 

[alex3619]

The link worked for me without a subscription. I had to double click on the icon. There was more that does require a subscription though. I doubt very much there will be a lot of use in this article.

The main treatment is sympathy and support according to the guide. The red flag bit is that some benefit from CBT and GET, which are more likely to be unhelpful or harmful than of benefit.

 

[IThinkImTurningJapanese]

I have a science base article that I tried to print for you but I could not get it to work..., Doc French

Today, still recommending CBT and GET would specifically preclude referring to this as a "science base article".

 

[Mary]

@AngelM - I was able to get into the link too. It has some very general language (basically meaningless) about ME/CFS and then links to several articles, which are not up-to-date and include recommendations for graded aerobic physical exercise.

Your doctor is not up-to-date at all on ME/CFS if this is what he is using as his guide. Most doctors know next to nothing about ME/CFS, so in general it's up to patients to guide the doctors, if the doctors are willing to be educated. @IThinkImTurningJapanese is totally correct that recommending CBT and GET precludes anything science-based.

I'd suggest you focus on educating yourself and then see if your doctor is willing to listen. A good starting point is this link by Hip which has a ME/CFS Roadmap for Testing and Treatment. It's chockful of valuable information.

 

[Mary]

One more option is to find a knowledgeable ME/CFS doctor in your area. Asking members here who they recommend is a good way to start.

 

[ljimbo423]

It sounds like his knowledge about ME/CFS is very limited and would offer treatment mainly for symptoms. It doesn't sound like he has much experience with treating possible root causes of ME/CFS.

 

[wabi-sabi]

UpToDate is an online resource used by medical people when they need a short, accurate, and up to date review of an issue their patient is dealing with, but that the provider themself isn't all that familiar with. Other than ME/CFS it really is reliable, so I would interpret this as your provider trying to give you real info, but the resources just aren't there for primary care people who don't know much about the issue. He will have had experience of using this resource before and it giving him good help, so it will probably come as a shock that it's inaccurate on ME/CFS. He also gave you the link to the provider info, not the patient info. That's interesting. Reading this article definitely made me cringe to think I'd be treated like that as a patient.

How are you feeling about discussing this with your provider? Do you want to talk through particular things in the UpToDate here in a safe place, to get clear on them first?

It's hard and scary when your primary provider isn't familiar with your disease.

 

[AngelM]

The main treatment is sympathy and support according to the guide. The red flag bit is that some benefit from CBT and GET, which are more likely to be unhelpful or harmful than of benefit.

Thanks to all. I had the sense that the doctor did not recognize ME/CFS as a real disease, and have asked him several times for an honest answer, but only got vague responses. That is the reason I decided to message him rather than speak about this in his office, where I always feel rushed. I specifically asked again in my message if he felt he could work with me on CFS tests and treatment protocols. I believe I was very clear that if he felt personally conflicted over the viability of CFS, I would appreciate being referred to another physician. His response was simply one more non-answer. I included the link because I wanted the forum’s opinion. I saw red flags, especially when I read the term “science-based,” as if that proved credibility, when in fact the term means nothing. Show me any medical website that is not “science-based.”

I am running out of options in finding anyone in Oklahoma who has any interest at all in CFS. This is not a “research” state, the result of a political decision made decades ago to fund college football over university medical research. (Hard to believe, but true.) I have written to a number of physicians and clinics at the University of Oklahoma Health Sciences Center regarding ME/CFS and, to date, have received not a single response.

Searching the internet for a local CFS (or even integrated medicine doctor) has been a waste of time. All local hospital websites include lots of information on ME/CFS, but I assume it is “canned,” because when I contact Physician Referral Services at those same hospitals about CFS, they have no idea what I am talking about.

Have not had a good week, (CFS flaring big time) and am completely frustrated. Seems I get my hopes up only to have them dashed again and again. Instead of support and care for a valid physical illness, I continue to get recommendations for outpatient behavioral health programs. Why? Because I have insurance that will pay for behavioral health, and most of the hospitals here have failing as psychiatric programs. Excuse my venting. I am angry.

 

[lauluce]

I think @AngelM is right in that to read the FULL article you need a subscription, as at some point it reads "To continue reading this article, you must log in." and there are many references at the foot of the page that aren't used in what little of the article can be read and I suspect are used in the rest of the article

 

[lauluce]

Thanks to all. I had the sense that the doctor did not recognize ME/CFS as a real disease, and have asked him several times for an honest answer, but only got vague responses. That is the reason I decided to message him rather than speak about this in his office, where I always feel rushed. I specifically asked again in my message if he felt he could work with me on CFS tests and treatment protocols. I believe I was very clear that if he felt personally conflicted over the viability of CFS, I would appreciate being referred to another physician. His response was simply one more non-answer. I included the link because I wanted the forum’s opinion. I saw red flags, especially when I read the term “science-based,” as if that proved credibility, when in fact the term means nothing. Show me any medical website that is not “science-based.”

I am running out of options in finding anyone in Oklahoma who has any interest at all in CFS. This is not a “research” state, the result of a political decision made decades ago to fund college football over university medical research. (Hard to believe, but true.) I have written to a number of physicians and clinics at the University of Oklahoma Health Sciences Center regarding ME/CFS and, to date, have received not a single response.

Searching the internet for a local CFS (or even integrated medicine doctor) has been a waste of time. All local hospital websites include lots of information on ME/CFS, but I assume it is “canned,” because when I contact Physician Referral Services at those same hospitals about CFS, they have no idea what I am talking about.

Have not had a good week, (CFS flaring big time) and am completely frustrated. Seems I get my hopes up only to have them dashed again and again. Instead of support and care for a valid physical illness, I continue to get recommendations for outpatient behavioral health programs. Why? Because I have insurance that will pay for behavioral health, and most of the hospitals here have failing as psychiatric programs. Excuse my venting. I am angry.

I'm angry too, we all are! I completely understand you, I am in the same situation as you, I hope one day this nightmare will finally be over for all of us

 

[AngelM]

How are you feeling about discussing this with your provider? Do you want to talk through particular things in the UpToDate here in a safe place, to get clear on them first?

I would very much like to discuss this with my PCP. I would like to be able to present newest research in a way that is condensed and clear. CFS is a complex illness. I am only beginning to understand some of the science, while at the same time trying not to confuse myself. So to explain it intelligently to a doctor is a challenge.

I just listened to a lecture by Nancy Klimas (2017) on her latest SolveCFS research, and she mentions that she got a great deal of funding from the DOD because the symptoms of Gulf War Syndrome so closely mirror those of CFS. I was shocked to read how similar the symptoms are—though Klimas goes on in her lecture to explain that on a molecular level there is a definite difference between the two illnesses. I thought since Gulf War Syndrome was primarily a “male” illness, a male doctor would identify with it it more easily than CFS, which is considered (for reasons I don’t understand) as a “female” illness. But what I found was that people with Gulf War Syndrome carry the same stigma as PWCFS and are equally dismissed as malingerers.

When I listen or read the work of CFS researchers who address the illness from a molecular or genomic perspective, it makes me think that most physicians lack not only knowledge of chronic illnesses like CFS or Gulf War Syndrome, but probably lack the ability or background to understand them. Not sure how you communicate with these physicians without insulting their intelligence. A doctor with an ego is going to shut you down before you get a chance to communicate.

 

[Mary]

@AngelM - the best many of us can hope for is a doctor who, while not knowledgeable about ME/CFS, is open-minded and willing to listen and learn. There are just so few doctors out there who know anything about it.

I wouldn't try to get a doctor to do a lot of complex reading about ME/CFS. I think it would be overwhelming and very time-consuming. I'd concentrate on one thing at a time, do my own research, and then go to the doctor (if you can find an open-minded one) with the one thing you want to tackle, one test or one issue you want to address. See what happens and then try another thing.

I would provide a basic primer about ME/CFS, such as the Institute of Medicine's 2015 report on ME/CFS. @PatJ's blog provides some valuable links you might use as well.

And I would do a separate thread asking members here names of good doctors in your area.

 

[taniaaust1]

Thanks to all. I had the sense that the doctor did not recognize ME/CFS as a real disease, and have asked him several times for an honest answer, but only got vague responses.

I didnt look at the link but I can say from what you posted there, that this doctor IS NOT a suitable one for a ME/CFS patient. You will know when you've find a good doctor for this as that dr will be listening to you and will be completely honest and open about how she/he feels about this illness when you ask questions and will not leave you still wondering about their views.

Ive had ME long term and in this time Ive dealt with countless drs (probably at least 50) and can say all the doctors like how you described do not work out and actually have at times severely complicated things for me (eg trying behind my back to get me diagnosed instead with psych illnesses I dont even have.

I had dr which was like you described who though he lead me on thinking he would help, he was just vague at my questions.. in reality he was trying to get me diagnosed with Bipolar Disorder!!! even after he sent me to several psychs and they said no.. behind my back he was still trying to do this.

He even went as far as when I finally found a ME/CFS specialist.. he was ignoring the advice being given to him by this experienced ME/CFS specialist (who was actually also a researcher in the field) about how to help me and not even telling me that that the other was contacting him regularly over me. So I ended up being left thinking the specialist wasnt helping me either when in fact he was advising my primary doctor in whats to help me and thinking he was then working with me. It turned out that this "vague dr" did not believe i the existance of ME at all, and I wasted a whole 18mths-2 years on seeing him and having him manage me.

I can also say that it is near impossible for even a very knowable ME patient to retain a dr in his thinking of the illness if he isnt even open about his thoughts!!! These doctors tend to lead patients on but do not help.

The best way to find a knowledgable dr on ME/CFS is to find other patients in your state and ask them who they are seeing. Even if the dr is quite far from you to the point you couldnt get there even for just 1-2 appointments (that can be great for getting a heap of testing done which hasnt yet been done), you may be able to contact him/her and ask the dr who is helping ME/CFS patients who he can recommend closer to you.

So seek out other ME/CFS patients and seek out any ME/CFS support groups in your area and ask those too (they often hold dr recommendation lists.

The other thing with finding a suitable dr, if there isnt a knowledable one, it will probably mean you will have to train one to help you with things. It can be far easier to find this kind of dr. Ive found suitable drs for me to teach them.. are ones which when I ask them what they think about ME/CFS they tend to immediately tell me its something triggered by a virus and will go on and right away tell me they do not know much about it. (they dont try to hide their lack of knowledge on it).

Ive had to usually "talk these drs into taking me on" as a patient as they were reluctant due to having a good understanding that I had a complex illness they didnt know much about but its all worked out great with them. Neither of the drs I worked with to train them in ME/CFS and my illness were old ones (one was a young dr who seemed probably to be just out of medical college unfortunately I since moved so right now are back at the seeking a dr thing again).

**handy hint.. if you find a doctor who has as her special interests "womens health".. Ive found using the "3/4 of the people who get this are female" card on her has helped convince a reluncant dr who I had realised would be probably a good dr to take me on as a patient.

dont though expect drs you are trying to train in this illness to be too much into "experimental" things though and expect to have to provide them with good info so they are guided. They can be great though in helping with various symptoms and taking those seriously and helping you when you need letters or a backup support when dealing with others. Dont underestimate just how much having symptoms treated can sometimes help make this whole illness more bearable even if the dr isnt "fixing" the whole illness (which is something even the best ME/CFS specialists find hard to do).

 

[wabi-sabi]

The IOM report Mary mentions is a very good one to bring to your doctor. Another good resource is "Myalgice Encephalitis Chronic Fatigue Syndrome Primer for Clinical Practitioners https://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

I hope that link works, but if not just google the title. This is a publication put out by the International Association for chronic fatigue syndrome/myalgic encephalitis. Their website is iacfsme.org and they have some good resources there. The hard reality is that with so few specialists working in this area, ordinary primary care people need to learn how to manage it. This publication is the association's attempt to teach them so we don't all have to wait in line to see Dr Klimas! I guess it comes down to whether you feel your current doctor is educable or not, and whether you what to spend the energy doing that. That's the approach I'm currently taking, since there aren't any specialists in my state either ( or at least not that I've been able to find).

Most autoimmune diseases are predominantly in women. Nobody knows why. ME/CFS follows that pattern. That becomes problematic because medicine has a long history of being predominantly male and blowing off women's complaints as "hysteria". Look at all those poor Victorian ladies diagnosed with hysteria, when they actually had something going on. I see ME/CFS as a continuation of this historical thread in medicine. Wasn't that outbreak at the Royal Free Hospital dismissed as mass hysteria, and that's what set us on the terrible CBT/GET path? You're probably not going to want to discuss history and sociology of medicine with your provider! But that's part of what's going on in ME/CFS getting ignored.

 

[me/cfs 27931]

Just wanted to chime in here. UpToDate is in the process of completely rewriting their ME/CFS content. They've already made some changes.

UpToDate is using the new CDC Info for Healthcare Providers for their rewrite (so one would assume no more GET/CBT). They have also said they would change the disease name from CFS/SEID to ME/CFS.

I can't get a release date for the new content, but am told it should be soon.

I'd be happy to provide more detailed information via PM.