Are you getting appropriate care from a doctor? (ME/CFS patients)

[oceiv]

I've been having a serious doctor access problem and it's been affecting my health. It's made me research what percentage of ME/CFS patients are getting/able to get appropriate treatment from a doctor and what percentage aren't. But It's been hard to find such data. I'm curious to see the poll answers and input, here. I'm also trying to get a sense of how many people can and can't get local care and how those who have to get out-of-state care are limited by that factor (you will see relevant distance answers at the bottom of the poll).

I'm also trying to create an advocacy letter on this topic.

Appropriate treatments are what our too few ME/CFS experts are dispensing. Examples are B-12 shots or sprays, antivirals, sleep aids, advice on pacing and resting, tests on our immune system, pain medication, nutritional supplements and herbs, etc.. Inappropriate care would be psychological treatments like CBT, GET and strenuous PT, which exacerbate your symptoms, etc..

Regular treatments would be at least a few times a year (in person, phone, skype) and enough to manage/attempt to manage your ME/CFS.

Please answer if you are an ME/CFS patient or you are answering for an ME/CFS patient who is unable to respond. You may choose multiple answers. You may also change your answers. Let me know if I've missed possible answers. Please expand on your answers, below. I'm interested in hearing about other patients' doctor access/treatment experiences.

If your answer varies, depending on how you're feeling, answer based on the last 6 months or less if need be.

 

[WillowJ]

I don't know if I answered correctly. I marked both that I got "regular" care for comorbid conditions and that I was getting "irregular" treatment from a local doctor. I am not able to see an ME specialist (there is none for hundreds of miles). I finally get reasonably good care for comorbid and acute conditions, but I can't always get to my local doctors for this.

My main problem with doctors not knowledgeable about ME is that my care is fragmented. They are all looking at separate systems and they do not know that things tie together, and some don't seem to realize that I have other important issues in addition to what they know how to treat.

I don't even know what a core treatment for my ME would be (antivirals? autoimmune drugs? something similar to what MS patients have? something more like mitochondrial disease treatment?), so I don't expect them to, either, but I'm super tired of going to 4 different doctors that don't know that "their" thing is related to my "other" things (or that "their" thing is not my only/main problem).

 

[worldbackwards]

What do you mean by appropriate? I see my doctor every few months, but he's got nothing to offer and doesn't believe in the CBT/GET route (be praised!) so I wouldn't call it appropriate treatment, although at least it's not inappropriate treatment either.

 

[oceiv]

@WillowJ Yes, it sounds like you answered correctly. When I was able to get medical access, I was in much the same boat. I had a lot of specialists for co-morbid conditions, none of whom treated my ME/CFS or worked together/coordinated or looked at my whole illness situation. All of whom wondered why I wasn't able to manage follow-up appointments. Getting care was the most-exhausting yet necessary activity I did. My GP wanted all the tests and records, but told me she wouldn't treat my ME/CFS. I should maybe add something about uncoordinated specialists?

@worldbackwards I gave some examples of appropriate care in the first post, but to expand on the concept: Is your doctor giving you any treatment that is intended to treat your ME/CFS? Is that treatment helping? It sounds like you might be getting local treatment, but it's either not for your ME/CFS or it's not appropriate because s/he doesn't know how to help you?

 

[WillowJ]

All of whom wondered why I wasn't able to manage follow-up appointments.

at least my PCP understands my limitations. I am so very fortunate to finally have someone who actually understands that it's difficult to get out of the house and do everyday things, and how hard it's been to get care from indifferent doctors over the years.

I've been having a serious doctor access problem and it's been affecting my health.

I hope your situation gets better soon. tc

 

[worldbackwards]

It sounds like you might be getting local treatment, but it's either not for your ME/CFS or it's not appropriate because s/he doesn't know how to help you?

That sounds about right. He just keeps an eye on me basically and he write letters that help get me benefits. I think he just wants to feel like he's doing something - he's a nice man but his hands are tied (this is England, y'know ).

 

[oceiv]

@WillowJ and @worldbackwards Shows you how even a small amount of doctor understanding, care and effort can make a difference in our lives. I'm happy to hear that you've found some medical understanding. I read in a study that the disbelief and negative attitudes towards our illness is viewed by patients as even worse than the symptoms, themselves. Acceptance is a good step from doctors.

Thanks also for the support.

 

[meandthecat]

If I mention ME or any symptoms around it there is a slight pause and it is as if I hadn't spoken. I was being monitored for prostate cancer and one GP was adamant that it was a waste of his time. I didn't see him again and took the surgery. I have been verbally attacked before I have spoken a word, I have never asked for sick notes and quickly learned not to go unless it was desperate. I have never had a treatment plan or a sympathetic word. It's bad enough having ME without being treated like scum by all the doctors I have met, that's quite a record for such a disparate group.
Doctors as a group practice and allow others to practice an appalling abuse of their position, when will such bigotry be seen as unacceptable?

 

[SOC]

My daughter and I get no local treatment from our heavily (so-called) evidence-based-medicine-focused (read, "cost-minimization-focused) local medical monopoly. ME/CFS doesn't exist in their world, although they will prescribe psychotherapy if you push for treatment. They also claim they don't treat dysautonomia. No thyroid treatment is available unless your condition is extreme -- thyroid cancer, Hashimoto's, etc.

So, we travel a long distance (1300 mi) to see an ME/CFS specialist once or twice a year. We get phone appts in between. It's been very much worth the cost and effort because we've both had substantial improvements in our condition as a result.

The travel was very difficult in the beginning, but got less so as we improved. We traveled 7 hrs by car to see our first ME/CFS specialist and only managed that by taking turns lying down in the back of the car since neither of us could sit upright that long. Now we travel a longer distance by airplane, but that is easier because it taakes less time and you can get wheelchair assistance in the airport. Currently we are both able to do the airports without the wheelchair support, but that is after 6 years of treatment by ME/CFS specialists. Depending on the airports we have to go through, we sometimes have a bit of PEM after the trip, but nothing like we used to get in the beginning when we were sicker. Although even then, several weeks of PEM was worth it to get substantial improvements.

For us, it's travel a long distance to see an ME/CFS specialist and get good treatment, or get NO treatment at all, even for co-morbid conditions. So we scrimp and save and do the travel.

 

[Sushi]

There was one option missing for me: I do get regular treatment from an ME specialist, in person and by phone, and this means long travel, but the travel neither makes me worse, nor do I tolerate it very well. It is a stretch at the time and takes a few days to recover, but I manage.

I do get very appropriate care from my ME specialist and also support from a local primary care who has a good understanding of ME. I am very lucky in this way but it took me many, many years to come to the realization that I had to undertake difficult and expensive travel in order to get knowledgeable treatment.

Sushi

 

[Gingergrrl]

My answer is mixed. I have no local PCP or GP at all and local doctor (cardio) is really not helpful anymore and knows nothing about ME/CFS. If I have a regular medical issue there is no one local that I can turn to and not for lack of trying on my part.

My ME/CFS specialist is a 6-7 hour drive and if my husband did not take me, I would not be able to get there. Last time I decompensated from the trip so badly (with chest pain and angina on ride home) that I never fully recovered. This of course is not my doctors fault.

He is an amazing person and I will be grateful to him to the day I die but he is incredibly busy seeing patients from all over the world. I will be having phone consult with him next week and I think I have exhausted all treatment options.

I know my career is over but I plan to ask him if he believes that I will ever breathe normally, have muscle strength to do basic tasks and self care, walk sort distances w/o wheelchair and not be in pain. If he believes that, it will help me to keep going vs. give up.

 

[oceiv]

@Sushi I added an answer for you. It's at the bottom of the poll answers. "I'm getting regular treatment. I have to travel. Need some/minimal travel recovery time." Thanks for pointing out the absence.

More (complete) replies in the overnight hours. Thanks to all who have responded and voted, so far.

 

[Sushi]

I will be having phone consult with him next week and I think I have exhausted all treatment options.

I don't think you are even close to exhausting all the treatment options--there are many that you haven't tried. It is pretty common for doctors and patients to have to experiment for 1 year, 2 years or more to find the things that work for you. We are all so different and there are so many things to try.

But don't give up hope yet. As others have said, the mold connection is highly suspicious and, if it does turn out to be one of the culprits, there are protocols to deal with it--both in your apartment and in your body. I am never without a good hepa filter system and do other protocols for mold in the sinuses, for instance.

Sushi

 

[SOC]

@Sushi I added an answer for you. It's at the bottom of the poll answers. "I'm getting regular treatment. I have to travel. Need some/minimal travel recovery time." Thanks for pointing out the absence.

More (complete) replies in the overnight hours. Thanks to all who have responded and voted, so far.

That fits me better, so I changed my vote.

 

[oceiv]

If I mention ME or any symptoms around it there is a slight pause and it is as if I hadn't spoken. I was being monitored for prostate cancer and one GP was adamant that it was a waste of his time. I didn't see him again and took the surgery. I have been verbally attacked before I have spoken a word, I have never asked for sick notes and quickly learned not to go unless it was desperate. I have never had a treatment plan or a sympathetic word. It's bad enough having ME without being treated like scum by all the doctors I have met, that's quite a record for such a disparate group.
Doctors as a group practice and allow others to practice an appalling abuse of their position, when will such bigotry be seen as unacceptable?

This is horrible, @meandthecat ! I'm sorry that you have had to suffer through this awful treatment. Wrt to my ME/CFS treatment, I can relate to your experiences. When I had or saw doctors, most of them scoffed, sneered and were dismissive (or worse) of ME/CFS. Wouldn't touch it. I'm sure many of us out there can relate. It isn't right that you have had to deal with such medical abuse and neglect. It's bad enough being sick, but to do it without medical treatment, support or even doctor acknowledgment is a burden we shouldn't have to bear. It shouldn't have to be that so many of put off care because too many doctors treat us so badly.


I'm not sure where you're located, but one of the things we had talked about in writing to the U.S. congress about this issue, was requesting that we be added to the Americans with Disabilities Act. Many other diseases and disabilities are specifically listed. There should be some way for patients to pressure our respective governments for this unfair burden to change.

 

[oceiv]

My daughter and I get no local treatment from our heavily (so-called) evidence-based-medicine-focused (read, "cost-minimization-focused) local medical monopoly. ME/CFS doesn't exist in their world, although they will prescribe psychotherapy if you push for treatment. They also claim they don't treat dysautonomia. No thyroid treatment is available unless your condition is extreme -- thyroid cancer, Hashimoto's, etc.

So, we travel a long distance (1300 mi) to see an ME/CFS specialist once or twice a year. We get phone appts in between. It's been very much worth the cost and effort because we've both had substantial improvements in our condition as a result.

The travel was very difficult in the beginning, but got less so as we improved. We traveled 7 hrs by car to see our first ME/CFS specialist and only managed that by taking turns lying down in the back of the car since neither of us could sit upright that long. Now we travel a longer distance by airplane, but that is easier because it taakes less time and you can get wheelchair assistance in the airport. Currently we are both able to do the airports without the wheelchair support, but that is after 6 years of treatment by ME/CFS specialists. Depending on the airports we have to go through, we sometimes have a bit of PEM after the trip, but nothing like we used to get in the beginning when we were sicker. Although even then, several weeks of PEM was worth it to get substantial improvements.

For us, it's travel a long distance to see an ME/CFS specialist and get good treatment, or get NO treatment at all, even for co-morbid conditions. So we scrimp and save and do the travel.

Your local EBM sounds really drastic in what it doesn't cover! Not even less extreme cases of thyroid conditions - wow. It's wonderful that you and your daughter found the determination, strength and general planning smarts to make the long trip. It's important for patients to hear how you managed to travel, the strategies you used and how even your PEM has improved after regular treatment. May I ask how long it took to see such improvements?

Your last sentence says so much.

I used to be able to travel irregularly to a specialist and would love to be able to again. The irony is that often the sicker with ME/CFS a person is, the more they need to see a specialist and the less likely they are to be able to access one. I'm glad you and your daughter were able to find a way through this all-too-common ME/CFS predicament, with measurable success.

I wonder if the will was there in our government, how specifically they could help doctors get trained in appropriate ME/CFS care?

That fits me better, so I changed my vote.

I'm doubly grateful then that @Sushi suggested it. Although ours aren't scientific polls, the information this one is giving so far highlights the patient needs out there. A lot of people aren't getting care. Yet some patients are managing to do so under difficult circumstances.

 

[oceiv]

There was one option missing for me: I do get regular treatment from an ME specialist, in person and by phone, and this means long travel, but the travel neither makes me worse, nor do I tolerate it very well. It is a stretch at the time and takes a few days to recover, but I manage.

I do get very appropriate care from my ME specialist and also support from a local primary care who has a good understanding of ME. I am very lucky in this way but it took me many, many years to come to the realization that I had to undertake difficult and expensive travel in order to get knowledgeable treatment.

Yes exactly, it is an important realization and patients who can physically, monetarily and logistically get to an expert definitely need to hear this message as early in their illness as they can. It's great that you get care from both an ME/CFS specialist and an understanding primary care. Were you always able to travel with minimal recovery?



Discussing our varied patient care and doctor access realities may provide help to other patients. It would also be helpful to hear from those who have understanding local doctors, how they found them? If of course, they feel comfortable sharing.

It is sad though that many patients can't follow that course and there must be ways we can help change the situation.

For anyone who knows, I found this quote in another poll thread:

Also I made a mistake by not making sure the Unlimited Maximum Selectable Responses: were not turned off

What does this mean? I don't see any such poll options in editing.

 

[Kati]

My answer:I cannot access competent doctor and health care for anything (including issues that are not ME related) in my own country. i travel to a ME expert but It is causing financial issues and treatments are not supported in my own country.

 

[oceiv]

My answer is mixed. I have no local PCP or GP at all and local doctor (cardio) is really not helpful anymore and knows nothing about ME/CFS. If I have a regular medical issue there is no one local that I can turn to and not for lack of trying on my part.

My ME/CFS specialist is a 6-7 hour drive and if my husband did not take me, I would not be able to get there. Last time I decompensated from the trip so badly (with chest pain and angina on ride home) that I never fully recovered. This of course is not my doctors fault.

He is an amazing person and I will be grateful to him to the day I die but he is incredibly busy seeing patients from all over the world. I will be having phone consult with him next week and I think I have exhausted all treatment options.

I know my career is over but I plan to ask him if he believes that I will ever breathe normally, have muscle strength to do basic tasks and self care, walk sort distances w/o wheelchair and not be in pain. If he believes that, it will help me to keep going vs. give up.

This is key that it's not for lack of trying. I'm guessing that lots of trying and few results are widespread among patients. I don't know if you feel like this, but it can be scary to have no local care when you need it.

Thank goodness that you have and your husband can get you to one of the best ME/CFS specialists! The patient load burden on our precious few specialists who choose to help with this disease is too high. I fear that the relapse afterwards is something many patients experience. There should be a care option for ME/CFS patients that doesn't also ask us to sacrifice some of our health.

The loss of our healthy lives is so difficult.

I can't offer you light at the end of the tunnel insights, because I'm in the tunnel, too. But, I can offer you support, empathy and some insights from someone who shares such challenges. You have this community so full of knowledge, you have the drive to seek out solutions to get better and you have a specialist who may be open to trying suggestions here of what has worked for other patients. The other thing is that some treatments can take a long time to work. Before my crash, my PT treatment progress was very slow. Then one day much later, all of a sudden the slow progress became clear. I hope your current challenges resolve and you will make progress.

 

[justy]

I answers twice...I do have irregular treatment from an M.E specialist, but it is an 11 hour drive away in another country and takes a long time to recover from so I have not been able to travel as often as I would have liked. The treatment is also irregular because I haven't been able to tolerate most of the treatments so its been hard to get going with anything. I also have very irregular care from a local GP - although I wouldn't describe this as care or treatment. I go and see them or speak to a Dr on the phone if I absolutely have to, but they have never offered me anything for M.E or even for pain. They only ever look at my issues in isolation and its hard to get to see the same Dr so find myself explaining very complicated scenarios over and over again. I try and avoid them if at all possible.

I have a lot of trouble getting to the surgery - its only 3 miles away but I cant drive and there is no public transport - plus I cant self propel my own wheelchair. My husband takes me, but getting appointments to work around his job is very hard. Sometimes a neighbour takes me. I cant always go as often as I would need due to energy expenditure issues - especially as its usually a wait in the surgery for an hour at least everytime, sitting surrounded by people coughing and sneezing.