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BMJ Blogs: Ethical Failures in the treatment of CFS

Binkie4

Senior Member
Messages
644
In Oct when seeing a Consultant cardiologist, he greeted me with " a lot of people with ME are mad": he did actually add " but you are not" as if he was doing me a favour. Epistemic injustice indeed. In the last 12 months I have also had another Professor from a non ME consultation tell me " there is no such thing as ME".

I think it was Nancy Klimas who said patients approach doctors with ME symptoms, and leave with PTSD.
 

worldbackwards

Senior Member
Messages
2,051
I hope you replied that you had never heard anyone suggest that ME was a thing.
latest
 
Messages
2,125
the basis of the stigma and injustice

In my experience and, I imagine, others it's not only in relation to treatment/lack of for ME where the stigma can really harm. It's also if you go to a GP with a 'non-directly related to ME' health issue and maybe they see on your notes, or you tell them that you have ME. The change in attitude can be stark; and the possible implications of having ME with regards to treatment of any other condition tends to be completely disregarded.
 

eafw

Senior Member
Messages
936
Location
UK
fixing the response of one individual doctor would do little, comapred with fixing the system that causes the injustice/harm/distress.

Yes, I'm glad that this stuff is getting published, it is a huge part of the battle we have (especially here in the UK). The attitude of the medical profession towards us is extremely harmful, it has caused real and continuing damage to many - so the systemic "hearts and minds" approach (addressing the BPS brainwashing that the medical profession have so eagerly bought in to) is vital.
 

Old Bones

Senior Member
Messages
808
I must say I think MCS and/or EHS are even further down the hierarchy.

I saw a new internal medicine specialist yesterday who asked me about toxic exposure. When I answered not currently, but that I became ill (actually worse) during an extensive office renovation, her response was: "I realize many doctors deny the existence of multiple chemical sensitivity. I'm not one of them. I'm sorry you were so badly affected." She also acknowledged ME, Mast Cell disorders, and POTS as being real -- no explanation from me was required.

I've seen a number of new specialists this year -- each one being far more accepting and knowledgeable about the collection of "orphan" diseases/conditions discussed among PR members than I expected. So I think awareness is growing inside the medical system among physicians who see, and treat, patients. But, we definitely need our governments to catch up, and provide funding.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In my experience and, I imagine, others it's not only in relation to treatment/lack of for ME where the stigma can really harm. It's also if you go to a GP with a 'non-directly related to ME' health issue and maybe they see on your notes, or you tell them that you have ME. The change in attitude can be stark; and the possible implications of having ME with regards to treatment of any other condition tends to be completely disregarded.

So true. Ive seen that so much. I get bowel bleeding and not one doctor has sent me for a colonospy to find out why even though I have a family history of bowel cancer. I know lots of others including ones younger then myself who doesn't have ME/CFS. Their doctors do proper testing and colonsopy is done when they have lesser bleeding then what Ive had. My issues consistently get ignored all cause I have ME/CFS including when I had sleep issues. I couldn't find a dr to try to help me with those while ones I know who don't have ME/CFS and had sleep issues, well their drs all treat them.

My sleep issues weren't even treated till I got to the point where I'd gone FIVE days with NIL sleep and was getting hallunciations due to lack of sleep. Most drs do not take us seriously due to the diagnoses we have.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Most drs do not take us seriously due to the diagnoses we have.

This is a massive problem. Most of us have given up even trying to get help for M.E, but when we are forced to seek medical care for another health issue we are largely ignored and disbelieved. The other huge issue is that we cannot access health care for other health issues.
 
Messages
2,087
I know our advocacy resources are limited but it often struck me how little seems to be focused on University schools of medicine and related teaching hospitals.

If we ever want to change this situation you'd imagine it has to come from these places.
 

HowToEscape?

Senior Member
Messages
626
just for your info I wrote and co-authored another paper on Harms associated with the BPS model in ME/CFS - a very detailed article, it went into review for 6 months and then it was rejected by the editor who said "he didnt trust in the term ME, he didnt agree the BPS model was harmful and that we should have balanced the article by writing about what good the BPS model does"

so, please bare with us regarding articles, each covers one particular problem - we will be sending our harms article elsewhere shortly; we have many more papers in production.

Isn't an editor intended to screen for valid method, execution and significance, not for usage of approved terminology and reaching a desired conclusion? What is science if it does not occasionally reach a disruptive result, rather than confirming what's commonly believed?
 

HowToEscape?

Senior Member
Messages
626
This is a massive problem. Most of us have given up even trying to get help for M.E, but when we are forced to seek medical care for another health issue we are largely ignored and disbelieved. The other huge issue is that we cannot access health care for other health issues.

....and half the people here in the USA want us to be subject to the same single-source system that you have.
 

Old Bones

Senior Member
Messages
808
I know our advocacy resources are limited but it often struck me how little seems to be focused on University schools of medicine and related teaching hospitals.

If we ever want to change this situation you'd imagine it has to come from these places.

I totally agree. Many excellent patient advocates have tried, and failed (through no fault of their own), to achieve funding for ME by bringing attention to the illness in political/governmental realms.

This year alone, two physicians (my GP, and one specialist) have apologized to me over the abandonment of ME. They want to help, and are trying to do so within the limitations of the Canadian Medical system, which they acknowledge are significant. I'm sure they are not alone in feeling "hamstrung". Until more physicians demand help for their patients, things are unlikely to improve -- or at least not as quickly as they need to.

Although I did experience appalling disrespect/denial from a couple of medical practitioners in the past, these days all members of my healthcare team are supportive. I realize this situation is not the "norm" for our group, but I generally don't consider doctors the enemy. Imagine the good they could do if more of them obtained accurate and adequate training in med school. My current doctors are the type for whom medicine is a passion, and who willingly accept all of my articles as their "bedtime reading".
 
Messages
2,391
Location
UK
Keep up the good work, @Keith Geraghty . It's great having you fighting our battles. Little by little...
Quite so. It's a journey, and every step in the right direction has to be good. This is a good step. We all crave that massive big jump straight to the finish line, but of course it is not going to happen that way. Final success will be the summation of all the steps along the way, big or small. The crucial thing is to keep making steps.
 

aaron_c

Senior Member
Messages
691
I give up. How do you convince someone they harbor "faulty illness beliefs" without challenging the legitimacy of their experience? Isn't that like having your cake and eating it too?

just for your info I wrote and co-authored another paper on Harms associated with the BPS model in ME/CFS - a very detailed article, it went into review for 6 months and then it was rejected by the editor who said "he didnt trust in the term ME, he didnt agree the BPS model was harmful and that we should have balanced the article by writing about what good the BPS model does"

I apologize for my ill-conceived snark, and thank you for taking the time to respond. (To us if not to me specifically.)

I would have thought that journal editors would be well-versed in logical fallacies.
LogicalFallaciesInfographic_A2.png
 

Keith Geraghty

Senior Member
Messages
491
thank you everyone for your comments and kind words, and also please do challenge us on every paper we write - I learn so much for just being on here and talking with everyone

We are lucky that ME/CFS just happened to parallel many of the subjects Dr Blease was looking at in her work - so I was able to bring her on board to collaborate. She brings a fresh perspective and is so adept at what she does, she is an outstanding young medical philosopher - I hope she and I will do many more papers and talks together.
 

Invisible Woman

Senior Member
Messages
1,267
Thank you @Keith Geraghty for all your hard work.

I believe that the majority of doctors who treat their ME patients dismissively/disrespectfully do so out of ignorance and misplaced arrogance. They are taught to "manage" their patient, but the automatic assumption is that they know more about the condition than the patient does.

I should imagine that for most UK docs the idea that the guidelines they are expected to follow can be actively harmful will come as rather a shock. I hope that the fact that the "establishment" continued to push those very same guidelines long after it became apparent there was a serious problem will dent their faith in the "system".