Action required from the recovered patients? Address bad Doctors

[Seven7]

To the recovered ones. To the community

There is something that has been driving me crazy w Jen's / Jeffs's story. As a community, those of you that find the source of the problem and have demonstrable cause, Should you all go back to the bad doctors that dismissed you and prevent them to be dismissive for the rest of their medical career?

I think if we make sure they do not hurt / dismiss another patient again then we make a service to the patients, I don't know if suing (and donating the money to the ME community) or what is the way forward but I feel it cannot just be dismissed because then they are not more educated and for each person that finds a cause, 1000 people or more are being dismissed.
So how do we stop the cancer????

As I watch videos on youtube w people very sick (POTs, ICC, ME...) the common thing is how dismissive doctors and arrogant have been. So if we do not something, are we enabling the behavior???

 

[Judee]

I'm not sure about suing but I was thinking it would be a good idea to send follow up letters especially to the doctors who tried to make it seem like it is all up in our heads.

I think someone like @Cheesus (??) once said he was planning to do this once he got well.

 

[Seven7]

I'm not sure about suing but I was thinking it would be a good idea to send follow up letters especially to the doctors who tried to make it seem like it is all up in our heads.

I think someone like @Cheesus (??) once said he was planning to do this once he got well.

I am afraid the arrogance will just shrug it off and move on. How do you cause enough pain that they will not do it again?? Money, time, bad publicity... It has to hurt. The arrogance and the profession is in crisis!!!

 

[Mary]

@Seven (formerly lnester7) - I worked for attorneys for over 25 years. Lawsuits are extremely time-consuming, extremely stressful and extremely expensive. I would never want to be involved in a lawsuit unless I had an extremely compelling reason to do so.

You have to have legal grounds to sue someone successfully and I don't think that not being taken seriously by a doctor is grounds for a lawsuit. To sue such a doctor would just cost the patient a lot of money and time and stress.

I totally agree that the arrogance, condescension, neglect and sometimes outright harm that patients receive at the hands of doctors is criminal. They are causing so much suffering. I don't know the answer but I don't think it's a lawsuit.

 

[Seven7]

but I don't think it's a lawsuit.

Any suggestions? maybe open a do not go to this doctor.com

 

[Mary]

Any suggestions? maybe open a do not go to this doctor.com

(I think the website would be overwhelmed with names! )

 

[junkcrap50]

Public shaming of doctors? Publish online testimonies of how certain doctors misdiagnosed and dismissed concerns/symptoms? (Would need to be careful as to not be sued for slander.)

 

[rel8ted]

Any suggestions? maybe open a do not go to this doctor.com

Sounds like a great way to find yourself on the receiving end of a slander suit. That can be proven.

Why waste your energy on trying to get even with someone? Maybe they aacted in ignorance. Maybe it was spite. Maybe they are so over worked they never see their family. It just doesn’t matter anymore if there becomes a cure for ME, we will be well and do will others who fall ill after us. That does not mesan go try and destroy someone’s medical practice. If I were asked in a private conversation about some of the quacks I have been to, I would say I had a bad experience & wont go back. End of story.

 

[Mel9]

How about writing a careful, well considered article for your local paper

explaining how this is happening in your town?
(No names, so no-one can be sued)

That might also help other unknown patients in the town.

And the offending doctors might get the message too.

 

[Dechi]

I wouldn’t sue because I would be afraid of the long term effects, ie good doctors (not only bad ones) becoming more and more hesitant to treat less known illnesses for fear of being sued. This would have a very negative effect on our community, knowing how hard it already is to find someone willing to at least try and treat us.

I would be in favor of filing complaints and having them reviewed by a special board, with actions taken to resolve the problem on a wider scope (training students, residents, doctors, implementing protocoles, ect). I think training is the solution. Not shaming or suing.

I also believe the more old school doctors leave their practice, the better it will become. Not that they are all bad, but a good portion of them are not open to learning from their patients. Younger doctors are less arrogant and sure of themselves and more willing to look outside the box.

 

[Rufous McKinney]

Should you all go back to the bad doctors that dismissed you and prevent them to be dismissive for the rest of their medical career?

At this moment I am entirely in agreement with what you have expressed.

This is just flat out wrong, and its gone on long enough.

I will refrain from further comments now: as I am additionally distressed from reading the NIH Advocacy meeting notes.

 

[Rufous McKinney]

Any suggestions?

Since I am in the US, I have been focused on the Insurance, more than the doctors. They charged us for services that aren't provided or delivered, and some of us have been harmed.

 

[Judee]

I will say one thing on lawsuits though. I think when everything comes out that ME/CFS is not a somatoform disease that there should be a class-action lawsuit against the authors of the PACE study because they have brought a lot of misery onto a lot of people.

The ripples of their arrogant placebo-effect study have affected patients in every nation on the planet. I say placebo-effect because they have convinced themselves that something is working even when it is very clear that it is not.

They are why there are so many doctors who treat us the way they do.

 

[Seven7]

. I say placebo-effect because they have convinced themselves

They are not convinced themself, they know exactly what they are doing.
There is a reason the only study paid by the disability government agency and the only study paid ever since.
They alter outcomes knowingly. This is about denying money to PLp. Is not arrogance. If we will ever get a chance to sue, we need to call it as it is. But yes that one has to happen too!

 

[andyguitar]

Yes @Seven (formerly lnester7) something needs to be done. Over here in the UK using the legal process to bring about change is costly and, I am sorry to say, unlikley to succeed. Using the political process to bring about change is the best route. I am fairly certain that there are things going on behind the scenes in the UK to alter the way the medical system works. And not just in relation to me/cfs. Like most democratic countries there are what we could call 'back channels' here that can influence what the Government does. I am confident that there are changes on the way which are going to favour the patient rather than the medical profession and pharmaceutical industry. Look at what has been happening in the USA regarding companies and Docs that have been pushing opioids to people who dont need them. Highly probable that some involved in that scandal will end up in prison. Serve them f***ing right.

 

[Rufous McKinney]

They are why there are so many doctors who treat us the way they do.

Pre PACE- some of us were disregarded for the previous umpteen decades. Although I am very surprised nobody in Britain has moved on the harm PACE has caused there.

I recall going to the doctor in the 1990s, really sick again: I must have MONO again. They dont even do a blood test. They could care less, apparently. That insurance company received: tens of thousands of dollars while I received zero care.

I'm told: take a yoga class

I'm told: you have post nasal drip: here is some nose spray (no, I don't). Threw it away.

All that happened the first time; I really pushed the issue that decades later: I'm still really sick but I don't get whats wrong.

So: I have some kind of Chronic Eppstein Barr: thats served for more decades to explain, in my own head, that something is still wrong. It also served: to explain that virtually nothing can be done about this.

Menopause/ hormones drop/panic/not sleeping/severe stress at work/lawyers. Kaboom. This was internally blamed on- my internal self. Everybody else seems to be surviving these highly stressful, intense external demands, but I"m not.

So then I developed the: endless doubting yourself, not understanding the symptoms, the triggers.

I then went about four years: ignoring this illness. The big mistake I made is/was- pushing for too long thru the pain and illness, when I should have stopped working. So I harmed my body more than other wise would have happened had I: understood far better what we are dealing with here. (like exhausted mitochrondria).

 

[perrier]

A little off topic: but I think in view of these remission stories, it is URGENT that there is a diagnostic test asap, and that CFS/ME doctors do better evaluations of patients, and that the dithering stop on the part of so many researchers (not Dr Davis, not Dr Hanson and a few other, obviously--these people push beyond imagination) with regard to this severely disabling disease. Some researchers do not seem to understand the urgency or the extreme suffering this disease brings on: I know they worry about their careers etc., but there are patients on the other end waiting for relief, because they cannot get through the day. Does Mr Collins sleep well at night? I am very agitated because we can do space travel, sort out the Big Bang theory, develop AI, but we cannot seem to pinpoint this illness. Dr Davis needs help.

 

[Rufous McKinney]

am very agitated because we can do space travel, sort out the Big Bang theory, develop AI, but we cannot seem to pinpoint this illness.

Yes totally that: I am forever saying this exact thing.

So we have: a big list of: things wrong that have been shown to be wrong in our bodies, that can be observed, measured, documented, enough to say: that body is unwell, compared with those healthy ones there. We have a massive list at this moment.

After I read the sentence (from NIH advocacy transcript) about the 9000 studies on MECFS- I just started sobbing again.

And every time they say: we can find nothing wrong: when they didn't look for anything tangible. The same tests are given to everybody, and they aren't addressing- whats actually wrong. DUH.

How about we all get our pink Lactate Brains mapped. Done. Brain pink. Diagnosed. Now: stop abusing patients, stop pushing anti-depressants. Allow off label use of existing medications in our case, until they find things that will actually directly treat it (off label uses= denial of coverage and treatment).