Plea to colleagues by doctor felled by ME

[Countrygirl]

I have come across quite a few health care professionals affected by ME on forums. We are probably exposed to a wider range of pathogens in the course of our work than the average person.

I think it is ironic (but to a degree understandable) that as patients we are so often disbelieved and dismissed by doctors, yet here is a doctor talking about their illness facing the same response from fellow patients.

ME truly can strike anyone, & it is a double blow finding ones self on the other side of the consulting desk. It makes you feel very vulnerable and stripped of your professional identity.

It was always said that the medical profession has the highest percentage of people afflicted with ME, followed by the teaching and nursing professions. I recall some years ago when taking a support group meeting of about 18 people with ME, I asked those who were in one of those three professions to raise their hands. Every single person raised their hands. Every person in the room was either a GP, nurse or teacher. The three professions are in the front line of infection, of course.

I have also been contacted by a doctor very recently who has developed severe ME and her colleagues are telling her she should know better than to believe she has a non-existent illness as the symptoms, according to them, do not make sense and the doctor has been referred to a psychiatrist. It must be especially humiliating and cruel to have your own profession declare you to be a fruitcake. Another doctor who phoned me was most distressed by the attitude of his colleagues who, he said, regarded ME patients with 'more contempt than we do people with depression'. (Exact quote)

Maybe @bombsh3ll I will put the two of you in contact with each other at some stage, if you agree, as you would have much in common as you are both doctors.

 

[Sidereal]

It's also possible he posted a sanitised version of events because he is able to extract a concise medical history out of a meandering life story that less informed/ non medically trained patients would present (irrelevant virus titres etc.) and/or because he doesn't want to post too many details in order to avoid getting identified. Admitting that you have CFS in the medical profession is probably worse at this point in history than admitting that you have bipolar or something.

 

[Wonko]

It seems like what is needed is for a few psychiatrists to get M.E. - or maybe all of them who espouse CBT/GET - and then just let them get on with it.

Seems like a good idea for a reality TV show, big brother like

(Live streaming CBT/GET and everyone can see just how much better they get over the months - not ethical, scientific, or even entertaining (but neither is BB), but a decisive demonstration/answer to if CBT/GEt works and doesn't cause harm) - wouldn't cost much either (paid for by ad breaks)

Come to think of it, it seems few odd that none have, unbelievable in fact, so where are they?

 

[IThinkImTurningJapanese]

It seems like what is needed is for a few psychiatrists to get M.E. - or maybe all of them who espouse CBT/GET - and then just let them get on with it.

Seems like a good idea for a reality TV show, big brother like

Come to think of it, it seems few odd that none have, unbelievable in fact, so where are they?

Be careful what you wish for, you just might get it.

 

[Barry53]

... a doctor very recently who has developed severe ME and her colleagues are telling her she should know better than to believe she has a non-existent illness as the symptoms, according to them, do not make sense ...

This is the crux of the issue really. If doctors do not believe other doctors when they get ME, is it any wonder they cannot believe normal mortals. I do wonder if this would/could change if a collective of medically trained PwME were able to present a coherent front to their profession, rather than as individuals. It feels to me like there may be hundreds or thousands of such isolated incidents, and perhaps the isolation of each incident is what really allows the misconception to persist.

 

[Barry53]

This is about as real and as moving as it gets ...

http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/

Lisa Steen: The wilderness of the medically unexplained

This patient perspective essay was written by Lisa Steen. She has since died. We have permission to publish the piece from her husband, Raymond Brown.

I am a GP, formerly a trainee psychiatrist and now 43 years old. In July 2014, I was diagnosed as having kidney cancer with multiple bone metastases. The cancer was extremely rare, associated with a succinate dehydrogenase B (SDHB) mutation. This genetic condition was later also found to be the cause of my carotid body paraganglionoma which had appeared when I was 18 and was finally excised when I was 27.

Lots more of Lisa Steen's writing in the link. Lisa did not die directly of her ME, but because her colleagues believed every symptom she complained of must be all in her head; they believed her ME was all in her head. Indirectly she died from her ME, and the attitude of her colleagues.

 

[Wolfiness]

Has anyone heard of a doctor with ME who does believe the PACE or O'Sullivan version? Genuine question.

 

[Countrygirl]

This is about as real and as moving as it gets ...

http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/

Lots more of Lisa Steen's writing in the link. Lisa did not die directly of her ME, but because her colleagues believed every symptom she complained of must be all in her head; they believed her ME was all in her head. Indirectly she died from her ME, and the attitude of her colleagues.

Was Lisa ever actually diagnosed with ME?

 

[bombsh3ll]

It was always said that the medical profession has the highest percentage of people afflicted with ME, followed by the teaching and nursing professions. I recall some years ago when taking a support group meeting of about 18 people with ME, I asked those who were in one of those three professions to raise their hands. Every single person raised their hands. Every person in the room was either a GP, nurse or teacher. The three professions are in the front line of infection, of course.

I have also been contacted by a doctor very recently who has developed severe ME and her colleagues are telling her she should know better than to believe she has a non-existent illness as the symptoms, according to them, do not make sense and the doctor has been referred to a psychiatrist. It must be especially humiliating and cruel to have your own profession declare you to be a fruitcake. Another doctor who phoned me was most distressed by the attitude of his colleagues who, he said, regarded ME patients with 'more contempt than we do people with depression'. (Exact quote)

That's heartbreaking, disgusting & sadly unsurprising.

Maybe @bombsh3ll I will put the two of you in contact with each other at some stage, if you agree, as you would have much in common as you are both doctors.

Yes I would like that. I agree there must be many of us, each isolated and let down by our own profession.

 

[*GG*]

He could be me. I am a GP in the UK who also I am ashamed to say bought into the attitude that no abnormality on standard tests = no somatic illness.

I have been so humbled since being struck down with ME myself, and also received no help from the NHS that I have worked for my entire professional life.

His words ring true to me, and I hope they have some impact on the profession.

I also wish I could afford to try Rituximab.

Bummer you cannot afford Rituximab, wonder if it is truly your answer, therefore worth the cost though?

GG

 

[Countrygirl]

Yes I would like that. I agree there must be many of us, each isolated and let down by our own profession.

I have sent an email, @bombsh3ll . She is quite poorly, so don't know if she will respond, but will PM you if she does.

 

[bombsh3ll]

Bummer you cannot afford Rituximab, wonder if it is truly your answer, therefore worth the cost though?

I have looked into the costs & would definitely give it a shot if it were free or cheap but would not jeopardize my family's home & security for something that at the moment has scant evidence. I'd love to participate in a research trial if one ever got off the ground in the UK.

I have sent an email, @bombsh3ll . She is quite poorly, so don't know if she will respond, but will PM you if she does.

Thanks, I appreciate that.

 

[trishrhymes]

I think we should, as we do with everyone else on this site, assume the story is genuine. I was going to suggest that he be prompted to join PR. I worry if he does, he may read this thread and be disturbed and upset that even his fellow ME sufferers doubt him. I read it, and had no doubts that it was genuine.

We need fellow sufferers who are doctors to join us in the fight for recognition and better treatment - like Charles Shepherd, Mark Vink, @bombsh3ll and others. And they need us as a community who believe and support them as they face hostility from colleagues. Please, let us not rush to hasty judgement.

 

[Marky90]

I dont get why the validity is being questioned, come on guys..

 

[RogerBlack]

I have looked into the costs & would definitely give it a shot if it were free or cheap but would not jeopardize my family's home & security for something that at the moment has scant evidence. I'd love to participate in a research trial if one ever got off the ground in the UK.

If you look at the Phase II trial results, it seems to help hugely a fairly small amount of people, and even fewer of those get long-term recoveries.
Most people get some response, but nowhere back to close to normal, and most revert to close to baseline.

Then there is the question if treatment once with Rituximab with the wrong protocol could screw you up for a treatment with the right protocol that might cure 90%, not 10%.

 

[rosie26]

I dont get why the validity is being questioned, come on guys..

Yes, I recognized his ME onset symptoms that he described. Even when he expressed his disbelief when weeks turned into months was very telling. There would have been many more symptoms he could have added as well, I am sure. He seems the real deal to me.

 

[Mij]

The comments are interesting. One poster raises the possibility that this story might have been composed by a well-meaning patient in order to attract the interest of doctors.

Yes this is what I was questioning, I wasn't questioning the validity as to whether this person is ill.

 

[Woolie]

The doctor posting this (and indeed any health professional now unwell with ME) should be comforted therefore that a significant number of those with "CFS" he treated with antidepressants and exercise will have improved with these measures, as they would probably not have had actual ME.

No, no, no, no, NO!

We should NOT assume there exists some population of patients with primarily physical complaints whose symptoms can be remediated by these interventions. By assuming this, we are validating the whole enterprise, saying this type of psychologising is totally fine, its all cool, as long as its not applied to us.

I'm willing to change my mind on this if I see solid empirical evidence for treatment-related improvements in any such group. That is improvement, over and above what could be accounted for by response bias.

 

[arewenearlythereyet]

No, no, no, no, NO!

We should NOT assume there exists some population of patients with primarily physical complaints whose symptoms can be remediated by these interventions. By assuming this, we are validating the whole enterprise, saying this type of psychologising is totally fine, its all cool, as long as its not applied to us.

I'm willing to change my mind on this if I see solid empirical evidence for treatment-related improvements in any such group. That is improvement, over and above what could be accounted for by response bias.

That statement was the standout one for me on this thread and I was composing my comment when you posted @Woolie I would just like to add that I think it shows very clearly the contempt that GPs have for their patients and how prone they are to prejudice.

Im not sure where the evidence is that shows that a significant number of people who claim they have CFS to a doctor are wrong and that such cases would improve with exercise and antidepressants? If this unsubstantiated number of 'non genuine'people that don't have 'proper ME' do exist, is it not more likely that they have something else like pernicious anemia that is equally poorly diagnosed by GPs and treatable within the guidelines they have?

I'm not sure why anybody would benefit from exercise/antidepressants in the long term (including people with depression). Surely if you don't bother getting to the to cause of the illness you can't say that you have cured anybody with these sort of treatments?. It's like saying paracetamol is a cure for a disease.

I think that this reveals that a lot of GPs in the NHS are in some sort of self delusional bubble. Patting themselves on the back for "patching patients up and moving them along" and then putting a caveat in that says that the patient "probably benefitted anyway" even if they got the diagnosis wrong, sounds a lot like the grandiose behaviour you see in the BPS crowd. It smacks of elitism if you ask me.

In my opinion this is not good patient care and it is false comfort.

This is a major problem in the NHS and not just for ME/CFS ......which by the way isn't just triggered by infections (another prejudice perhaps?)

This is not an attack on you personally @bombsh3ll more a complaint of the NHS and it's terrible practice at the moment driven partly by prejudice and a lot by underfunding.

 

[Woolie]

I agree with a lot of what you say, @arewenearlythereyet. I just wouldn't blame the doctors. Most are decent people who are doing their best to help their patients. They genuinely believe in "psychological" illnesses and their ability to treat them.

Once you've been on the other side though - like we have - you have seen the harm that this type of reasoning does. Then you really should know better, whether you're a doctor or not.

I do have a different view of medicine as a result of my experiences. Medical training emphasises absorbing matieral, not questioning or debating it. I would like to see more doctors taught to analyse primary research papers so they can make up their own minds what to believe and what not to believe - you just can't afford to outsource this to the researchers themselves because they all have their own agendas.

But I realise there's so much to learn in medicine, and its difficult to know where to squeeze that in.

Certainly, the conventional teachings about mind-body relations need to be overhauled. So many doctors really buy into that "power of the placebo" stuff. For some, its become a mantra. Its not till you analyse the actual evidence that you realise that this effect is largely a reporting artefact, not an actual real health benefit.

I would also like more training on when to say "I don't know". I just saw a documentary about the treatment of epilepsy throughout history. The explanations that flourished when there was a lack of understanding. And the harm that the treatments did. And each era feeling so confident that they had finally had nailed it.

No, they hadn't.

And similarly, medicine today thinks it has "nailed" everything. No you haven't. But now ,when you don't understand something, instead of making vague references to demons, you make vague references to the power of the mind. The psyche has become the new gap filler for what we don't understand. Equally vague, and equally unfalsifiable - perfect for the task!