Doctors have been taught to gaslight patients with #ME for decades.

[SWAlexander]

Doctors have been taught to gaslight patients with #ME for decades. This video from the 90s teaches GPs that patients are frustrating to work with because they are mistaken about the cause of the illness and can often engage in arguments.

https://twitter.com/i/web/status/1759767164511272967

Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up

https://twitter.com/i/web/status/1759694766210429303

 

[FoggyTortoise]

Far more doctors take M.E. seriously now than in the 90s.
The NICE guidelines were changed for the better in 2021 (was it?).
There has been progress. Slow and small steps still count (of all people, we should know that!).
Nobody with M.E. would deny that there is still a huge way to go, but we are not still where we were in the 90s and I am hugely grateful for that.

 

[Hope_eternal]

We are a year and a half into this and I can say that we experienced all the gaslighting and dismissive attitudes of the 90s. In fact, I see it constantly, on Reddit I came across a supposed doctor posting about how he was tired of all the ME/CFS patients droning on about their made up disease. This infuriated me! I didn’t end up posting back because I honestly don’t have the energy to duke it out with ignorant people but it hurt my heart because people who are suffering immensely and are scared and alone are treated with so much disregard. It’s criminal. These doctors took an oath to do no harm and with attitudes like that it’s doing just that! I do want so badly to open eyes about this illness. I get rude comments all the time, even from loved ones that tell me I need to make my son get out of bed, I tell them when he tries to do anything over his energy envelope he crashes and has to sleep for days they still don’t get it. Doctor and psychologist/psychiatrist have all said he needs to get out of bed more. My son would get so upset because he said when he crashed, he was doing all the things they said would help but it only made his condition worse. So he’s given up on doctors, it’s a damn shame. I’m hoping with long Covid and the similarities it has with ME there will finally be some treatments that work in the near future.

 

[SWAlexander]

experienced all the gaslighting and dismissive attitudes of the 90s

Nothing has changed.

The doctors from the 90s have retired, and the newcomers have never learned about ME/CFS. However, even among a group of young doctors, I noticed an acknowledgment that "this can be real." My doctor doesn't even like to talk about it.

 

[BrightCandle]

Its going to take at least 20 year for attitudes to change. Progress is made when old views leave the profession and new better trained ones enter and become consultants running departments. If there is a treatment found it will take a very long time to become normal. A treatment that is shelf stable and available as an Indian generic is a must for most of the people suffering this disease.

 

[Rufous McKinney]

Why would people be fearful, that something would cause their illness to get worse?

Because they experience it GETTING WORSE after they do these very NORMAL things. Over and Over Again.

 

[hapl808]

Doctor and psychologist/psychiatrist have all said he needs to get out of bed more. My son would get so upset because he said when he crashed, he was doing all the things they said would help but it only made his condition worse. So he’s given up on doctors, it’s a damn shame. I’m hoping with long Covid and the similarities it has with ME there will finally be some treatments that work in the near future.

At least you gave up on doctors quickly. I pursued all those things, constant crashes, worsening - over a period of almost 20 years. I refused to 'pace' other than when I was physically unable to get up, tried to push through, kept an attitude about what I could do rather than what I couldn't, didn't label myself or my illness, and all the things doctors encouraged.

And ended up relatively severe after starting in a more mild state (lost the ability to exercise, constant GI problems - but still was functional). Now I've been housebound for years, sometimes bedbound.

The doctors from the 90s have retired, and the newcomers have never learned about ME/CFS. However, even among a group of young doctors, I noticed an acknowledgment that "this can be real." My doctor doesn't even like to talk about it.

Sadly, apparently some of those doctors are still practicing today. One of them is Wessely's wife (at least according to Twitter), one is still a practicing psychiatrist, etc.

 

[SWAlexander]

Why ME research was stifled:

 

[FoggyTortoise]

I have lived with M.E. since 2001.
At no point did I say that most doctors now take M.E. seriously (if only!).
I acknowledged that there is still a long way to go.
I was just trying to inject a glimmer of hope and a grain of gratitude into what we all know is a grim situation.
The collective reaction from multiple 'senior members' suggests that this is not the forum for me to be part of after all.
I apologise for unwittingly causing so much upset and will leave as soon as I can work out how to delete my account.

 

[hapl808]

The collective reaction from multiple 'senior members' suggests that this is not the forum for me to be part of after all.
I apologise for unwittingly causing so much upset and will leave as soon as I can work out how to delete my account.

I know I can take things personally when I'm crashed (which is 24/7 these days), but I really didn't read any animosity or frustration with you in any of the replies? Of course there's general frustration that medicine hasn't made more progress in 30 years - and maybe differing opinions on how much has changed and in what ways.

I didn't see any upset members. The most strong response was 'nothing has changed', but followed up that younger doctors at least sometimes believe it can be real.

However, if you are looking for a place that only expresses positivity and hope for the future, then this may not be the forum for you. We often vent our frustrations, disappointment, and hopeless feelings here. I feel like it's more about practical things we can do, and discussing our misery with those who uniquely understand. But if that's detrimental to your mental state, then you might be better in a different setting or group.

Either way, I hope you don't think anyone was offended or upset by your post, and that you feel welcome if you want to stay.

 

[Hope_eternal]

I have lived with M.E. since 2001.
At no point did I say that most doctors now take M.E. seriously (if only!).
I acknowledged that there is still a long way to go.
I was just trying to inject a glimmer of hope and a grain of gratitude into what we all know is a grim situation.
The collective reaction from multiple 'senior members' suggests that this is not the forum for me to be part of after all.
I apologise for unwittingly causing so much upset and will leave as soon as I can work out how to delete my account.

Hi Foggy, I wanted you to know my reply was not a direct response to anything you wrote. I was only giving my account of what we have gone through. We did have 2 doctors after the first 10 that finally recognized it was ME and were very kind but just didn’t have any recommendations for treatment other than to try a functional doctor. I think everyone has such vastly different experiences with how doctors respond to their illness. And I think you trying to shed some positivity on the subject is admirable. It’s always nice to see glimmers of hope. I hope you don’t leave, especially if you find value here. I find value in you being here as I’m sure others do as well. Please take good care. I’m thinking of you ❤️‍🩹

 

[SWAlexander]

unwittingly causing so much upset

I'm not upset about your comments; more likely upset about the fact that, after all these years, people still suffering and science has not made significant progress.
I see the forum as a place to raise awareness and provide the information needed to confirm or rethink and explore new avenues we may have overlooked.

 

[SWAlexander]

I would like to share a little secret.

I've been managing not only my own 23andMe DNA account but also the accounts of 12 other individuals, including two family members for 10 years.
Among these 12, two (nonfamily) displayed all the symptoms of ME/CFS but had their concerns dismissed by several doctors, who instead referred them to psychiatrists.
With their permission, I began last year to delve into their DNA for answers.
In one individual, exhibiting moderate ME/CFS symptoms, I discovered copies of SMN1, SMN2, and "rs" related mutation in SMN3 and SMN4.
The DNA of the other person, who is severely affected to the point of hardly being able to leave the house, showed similar rs markers in SMN1, SMN2, but had only SMN3.

Since 2020, I have reached out to several ME/CFS organizations about these genetic markers, only to be completely overlooked.
However, after reading an article today titled "NIH study of ME/CFS points to immune dysfunction and brain abnormalities at the core of long-dismissed disease,"
Excerpt:
Researchers in the field think certain people may have a genetic predisposition that makes it more difficult for their body to clear an infection, so that could play a part. But if the disease can crop up after many different kinds of bugs, then what is the antigen — the molecule, protein, or thing — that’s driving an unrelenting immune response for months to years afterward?

I felt encouraged to contact two research facilities: one was NIH study and another in Italy. The Italian team responded promptly, asking detailed questions about my findings. Unfortunately, I have not received a response from the NIH.

 

[SWAlexander]

I have not received a response from the NIH.

I do have an answer from the
Office of Neuroscience Communications and Engagement

National Institute of Neurological Disorders and Stroke

on behalf of the Trans-NIH ME/CFS Working Group
See attachment: