Is there Any illness that has gone through what ME patients go through?

[ChookityPop]

In terms of not being believed and told its psychological even though ME patients communicate that graded exercise therapy and cognitive therapy makes them worse.

Is there Any illness that has gone through What ME patients go through? That would be Interesting to dig into.

What are the odds that the vast majority of patients with the same illness are lying and not to be trusted? Could it actually be that the vast percentage of ME patients actually are telling the truth? Someone are going to look terrible in future history lessons and ME patients are not one of them.

What Side of History Do You Want to Be On?


Edit: I wrote this post to learn more about other illnesses that has gone through the same so I can show them how they have failed patients in the past as part of my arguments against them. I just want to be prepared.

 

[Mouse girl]

yes, loads of them. Especially true for all illnesses that women get. MS was one of the latest ones that is very well known and severe.

 

[Jadzhia]

Yes, hypothyroidism is a case in point for many people when their labs don't match what doctors think they should do if you have it. The 'normal' ranges are so wide as to be nonsensical (covering 90% of the population). It can be difficult to get a diagnosis if you are unlucky enough to have a TSH that doesn't behave as it ought to! This can be caused by a number of things but doctors (in the UK, but further afield too as far as I'm aware) do not take people's symptoms into account, and treat each symptom separately. So you might have low stomach acid giving you reflux (which will be treated as high stomach acid so you'll get PPIs, you may have raised cholesterol (you'll get statins), raised HbA1c (hello, Metformin), fatigue ('are you depressed? Have some anti-depressants'). All the time these are part of the same disease - hypothyroidism! But that's ignored unless your TSH is a ridiculously high number - good luck with getting FT4 and FT3 measured!

Doesn't help that thyroid problems occur mainly in women. 'It's your age', 'it's perimenopause', 'depression', etc used to dismiss symptoms.

No, we cannot 'move on' until this sort of thinking is kicked into history. I have no idea how that can happen as it will require a complete re-thinking of how people are diagnosed and treated, less reliance on labs and computers and more old-school medicine where doctors actually spent more time with patients and did more hands-on testing.

 

[ChookityPop]

I ask because I think it can be valuable for me to be able to have examples to show the health care folks where I live that they are making the same mistakes as they did with MS patients etc. Then lay out the reasons why they are wrong (CBT and GET being debunked etc).

They are still looking at ME as a psychological issue where I live (I know this is a problem not only here). They have made it very hard to get social security here with a ME diagnosis. The government has hired a guy to set the guidelines for how to get social security and he has called ME a «fashion diagnosis»/popular diagnosis. And that all these patients needs is to move, find a new partner and learn how to not give a fuck.

I want to be able to come at them from every angle If I end up in a position where I have to meet them If they for example rejects my application for social security. I refuse to be bullied by these people. That was the first thing I told myself in the beginning of my illness when I understood that they seriously thinks its psychological and I just need to go back to work. I couldn't do anything but laugh at the absurdity of the situation I now found myself in. But I promised myself to never let these people shit on me and I will keep that promise I made to brave young Chookity.

I might not need to bring up the example with the MS patients. The obviously best thing to do is to show how the «science» they use to base their guidelines on is false and outdated. I personally have moved on a long time ago and I don't take it personal since I know my illness is real. That means I'm right and they are wrong. It proves to me that their mental immune system isn't very impressive.

 

[Crux]

Unfortunately,

Unless people change superstitious thinking , this false thinking will remain.
Even the medical community can behave that way when the science is not yet clear .
Calling any condition simply psychological is a cop out.

I don't believe there is any condition that cannot be found to have a physiological cause.

 

[Azayliah]

Is there Any illness that has gone through What ME patients go through? That would be Interesting to dig into.

There were diseases like that in history. I think syphilis was one of those, until they discovered it was being caused by an infection in the CNS. Don't remember others, but I'd guess there are books about this somewhere.

There are more recent stories about women being dismissed for things other than ME/CFS. A lot of women misdiagnosed with depression. Incidents of dismissive attitudes from doctors increase as biases about race and SES are added into the statistical data. Not sure that the information would be terribly useful to facing off against doctors, but here's a few articles about this:

https://fortune.com/2021/10/04/instacart-ceo-fidji-simo-womens-health-startup-metrodora-institute/
Woman with POTS: I was fainting constantly, I was feeling weak, and I went to see this neurologist. He said, ‘Sweetie, you’re just a tired mom.'

https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare
Woman with a brain tumor: "One of the GPs I saw actually made fun of me, saying ‘what did I think my headaches were, a brain tumour?’ I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously.”

Woman with endometriosis: She first fell ill at age 16, and for years, she suffered from chronic kidney problems, fevers, fatigue, and terrible menstrual and joint pain. She saw a primary care doctor, a urologist, and a pulmonologist. “Everybody was telling me there was nothing wrong with me,” she says. -- And then she got lupus: “I had a lot of, ‘You’re just hysterical,’ ” she remembers. “One of the more common things, especially in emergency rooms, was ‘You’re just drug seeking.’”

 

[Countrygirl]

This is relevant to the discussion:

 

[SNT Gatchaman]

Another example is the patient group (mostly female) harmed by surgical mesh implantation, typically for urogynaecology disorders.

Here is a link to a (moderately long) report for the NZ Ministry of Health document recognising the New Zealand patient experience. Warning: themes will be familiar to those in this forum — many of the patient stories are potentially traumatising to read and some involve graphic descriptions of physical disability, as well as medical dismissal of symptoms.

Hearing and Responding to the Stories of Survivors of Surgical Mesh: Ngā kōrero a ngā mōrehu – he urupare
Report for the Ministry of Health December 2019

 

[Rufous McKinney]

and I will keep that promise I made to brave young Chookity.

Good. This is an important revelation.

From that movie Cloud Atlas, which I love: I Will Not Tolerate Criminal Abuse.

be polite, be kind, be loving and be firm. And then laugh maybe.

At the ridiculous notion that this is an idea somebody came up because they don't really want to go outside, go for walk, visit the beach, enjoy a shopping trip. lunch or a phone call with a love one. Play. a record. Sketch or knit. Why would anyone want to do those things?

You give up phone calls to people you love to enjoy your psychosomatic-induced missing life?

 

[ChookityPop]

Where I live you must undergo GET and CBT, rehabilitation stay where you have to go to a rehab center and stay there for up to 8 weeks at most though 4 weeks is the standard I think. And courses about how to master living with ME which takes months. Even if you have done all of these they can still reject your application for disability.

Is rehab stays normal?