medical professionals, psychologists, and researchers

[Graham]

I have come across a small number of medical professionals, pretty much across the full range, who either have ME or a close member of their family does. In almost all cases, they have preferred to keep that fact secret, because of the potential reaction of their colleagues. The same seems to be true about psychologists, health researchers, and others working in the field. It seems to be particularly true if it is a child with ME.

If this is so, then it is a terrible condemnation of the medical system, and perhaps we should make more of it. So what can we try? I don't want to make claims that are untrue.

I've been around for long enough, I hope, for people to trust me, so if anyone wants to contact me directly in confidence, I'd be happy to hear from them.

 

[Hip]

Online ME/CFS forums should offer sufficient anonymity for such medics to post about having to keep ME a secret in their professional lives.

It would be great if such medical professionals would join ME/CFS forums, and tell their story.

Better still, it would be wonderful if these doctors could contact a journalist, and get a newspaper article published on this issue.

"The Disease That Dare Not Speak Its Name" might perhaps be a nice title for an article.

 

[NelliePledge]

This is why it’s good to see people like Dr Nina Muirhead speak out and take the message to the profession. I hope her efforts don’t get sabotaged.

 

[Sean]

"The Disease That Dare Not Speak Its Name"

That works.

 

[DokaGirl]

It would perhaps be helpful for these professionals to connect with each other....support in numbers.

I look forward to the day when no one with ME, nor their support network has to keep secret the fact this disease has side swiped their lives.

How terrible to be fearful for one's career, and reputation because a loved one has ME!

There is still so much shame due to stigma attached to this disease.

 

[obeat]

I was a doctor. Became ill in 1990 and had an awful time with doctors and medical friends. Didn't Weasely decide that doctors experience should be discounted?

 

[chrisb]

Didn't Weasely decide that doctors experience should be discounted?

He did indeed. What has yet to be established is whether these views were generalisations derived from personal antagonism to the views of Dr J Gordon Parish, or whether there was some wider evidence base on which the prejudice was founded.

 

[Kalliope]

It is my impression too, that there might be quite a few health care workers with personal experience with ME.

I've missed hearing from them. However, when I saw prof. Wyller's (known for a psychosomatic approach to ME) attack in 2017 on prof. Saugstad (doctor who has been standing up for ME patients for many years), I could understand why one might be reluctant to go public with such experiences.

The fact that prof. Saugstad is a close family member to an ME patient, was the first thing on Wyller's list against him:

He wrote:
Ola Didrik Saugstad is a very reputable researcher in neonatal medicine. It is therefore surprising that he in the ME-debate breaches several rules for scientific thinking and communication:
- Saugstad keeps quiet about conditions influencing his impartiality: Saugstad is a family member of an ME patient. His engagement is both understandable and praiseworthy, but it becomes misleading when he appears as a neutral, scientific expert.

Which is just odd. Do oncologists become scientifically impartial within their field once a next of kin gets cancer? But it does say something about the climate health care personell as ME-patients or carers are experiencing.

Miriam Tucker wrote this article last year Chronic Fatigue Syndrome takes down doctors too where she talked with four doctors with ME. Two of them chose to be anonymous.

Edited for clarity.

 

[Trish]

I would hope, with people being able to choose their own forum names here and so have anonymity, that health professionals would feel free to identify themselves as such if they want to, but of course it's up to each person what they want the rest of us to know about their professional background.

Perhaps Graham's invitation to contact him in confidence would enable a small group to form who could, if they wish, ask for a private subforum here just for medical professionals with ME for mutual support and to discuss ways they could contribute to medical education or whatever other advocacy they might choose to do, particularly within the medical profession.

 

[Graham]

Which is just odd. Do oncologists become scientifically impartial within their field once a next of kin gets cancer?

Do GPs dealing with human beings have to give up when they have family members who are human beings?

 

[DokaGirl]

It's the othering reaction. ME is stigmatized - viewed as lesser than, incorrect....anyone associated with this disease may be treated badly.

 

[Barry]

I would like to think this would not be confined to just doctors, researchers, etc. There are many other medical professionals whose attitudes have tremendous impact on people's well being - nurses, paramedics, ambulance crews, etc. Having encountered an ambulance man some while back, who was really decent and very capable, yet actually scoffed when I told him my wife had ME (it was me they were taking care of). I was able to set him a bit straight, and he did have the good grace to seem a bit more interested later. But it is so crucial for these people to become better educated, and gain more insights - these people are right on the front line, and sometimes the very first medical professionals pwME might encounter in an emergency. Compassion and understanding are so crucial here, and yet I found it quite shocking that if it had been my wife in the ambulance, this ambulance man would have had no understanding whatsoever. And I absolutely have to emphasise it was not because the ambulance man was a nasty / mean / miserable person; it was because he was a decent professional, who has sucked up all the crap they have been fed over the years, combined with the fact that the symptoms of ME are incredibly easy to misunderstand.

 

[Daisybell]

I’m a speech language therapist. (And I own several blue cardigans ). Most of my former colleagues in the medical field, in fact practically all of them, have completely disappeared from my life since I got ill. Partly because I’m not visible and partly I think because they can’t really ‘believe’ I’m ill....

 

[Wonko]

Have you considered green cardigans? This may be unconventional enough to re-engage their interest.

I am not a speech therapist, but everyone I knew is no longer on the scene - totally stuffed if, as has happened, if I need to get a sofa down the stairs, or a lift somewhere to pick something up.

People can be so inconsiderate at times, not being at my beck and call

 

[shak8]

As a former nurse, I hear/heard cavalier remarks about ME and fibro. Personnel tend to be brutally abrupt and dismissive about anything they, or their family members haven't experienced themselves.

Sure, cancer & MS evoke sympathy, but the mentality of healthcare personnel seems to be: I work too hard to have to expend any of my precious energy on these so-called {doubt cast by psychiatry} illnesses.

 

[Snowdrop]

This might make a good study. Asking for input from allied health professionals (with no personal or professional contact with PwME) on their views of what ME/cfs is.

Sorry this is once again a tangential remark.

 

[rvallee]

This might make a good study. Asking for input from allied health professionals (with no personal or professional contact with PwME) on their views of what ME/cfs is.

Especially highlighting the intergalactic-sized chasm between perception of reality and actual reality. The comparison would be shocking.

The expected reaction of about 90%+ of medical professionals to the fact that ME is as disabling and more common than MS would be a scoff of derision and complete disbelief. Most simply do not know anything about it, imagine it's barely more impactful than occasional sneezing.

 

[Wonko]

I see a need for secure 're-education' centres for medical professionals - they only get out, and are allowed to practice again, when they share our world view.

I would imagine heart surgeons aren't allowed to practise without a basic understanding of what they are doing, so it's not that off the wall.

And we definitely don't want a load of free range medical 'professionals' wandering around 'treating' ME when they don't even know what it is.

Like they do now.

 

[Graham]

I would like to think this would not be confined to just doctors, researchers, etc.

Agreed. That is why I started the thread with that.

I am playing around with an article that could include some sort of comment about this, but would be reluctant to do so unless I was sure it was more than just a rumour that attracted me. Certainly the ones that I have come across have been spread across a very wide "medical" spectrum.

 

[DokaGirl]

I have said this on other threads about being on the receiving end of nasty and rather shocking comments from health professionals.

Four such instances were spread over just 2 days, in relation to surgery at a well respected large hospital. Not a third world institution struggling to get good staff, and meet service and budget demands. If you want your name and the fact you have "chronic fatigue syndrome" yelled across a room, while other patients and staff are there go to this
hospital. If you want to have your appearance denigrated go there. If you want to be lectured about sleep hygiene, and implications made you neither need, nor deserve the surgery go there. If you want doctors to be hostile before they even lay eyes on you go there.

I won't name this institution. Not only because it's not OK for this forum, but because there are likely many, many more instances like this at numerous institutions. And, much more serious situations/abuse.

I was very glad to escape those staff, and that uninformed, nasty institution.