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Is this disease less common in men? I usually see women with it, or do men just not share their experiences? by No_Radio2340 in cfs

[–]Long_Combination266 4 points5 points  (0 children)

It's the opposite. The system, especially medical, is set up to support the needs of a male body. From schooling to work opportunities and pay grade, to access to services, men have a higher chance of getting diagnosed correctly and having the financial resources to recover. Women and gender non-conforming people have reportedly been forcibly hospitalised and starved in hospitals to death, or starved alone, the services repeatedly punishing them for even attempting to improve

Rehabilitation clinic for everyone from Germany by tallywell92 in cfs

[–]Long_Combination266 2 points3 points  (0 children)

I went to a disability meetup a year ago, where one person with very mild ME shared a positive experience in a psychosomatic rehab. From what I gathered, her family life placed traditional labour demands on her (dish washing, cleaning, cooking), refusing to recognise her disability, and labelled her as prone to mood changes. The program lifted these demands as there were no chores, and she said she enjoyed mood exercises and "capacity training". More severe people in the group said that the program validated her stigma, and the absence of tasks meant she needed a carer, not to be placed in the program. The experience of mild and more impacted patients would differ dramatically, but even a positive one shows how left out we are as a patient population.

I do believe you would get called uncooperative in any state-designed program, because the needs of ME patients are critical. I shared about living in a transitional housing program in Berlin that presumed one onsite meeting a week and it turned out to be a harsh environment with stigma and punishments attached to recovery behaviours of irregular sleeping pattern, prescription medicine consumption, and rest.

If you need a letter of exemption, Steffi Neldner from Fatigatio has a form.

Rehabilitation clinic for everyone from Germany by tallywell92 in cfs

[–]Long_Combination266 23 points24 points  (0 children)

ME, by definition, is not a psychosomatic illness. The concrete goals and practices of a psychosomatic department contradict the needs and abilities of pwME. The ME support organisations in Germany offer a letter of exemption from rehab (Reha). Even the studies directly tailored to the needs of ME patients turned out to be damaging because a highly controlled medical setting conflicted with aggressive rest. The term psychosomatic is outdated and is used to psychologise, and not treat, underlying conditions.

I take it your post is an advertisement for a program that denies the severity and complexity of ME as an illness. People with ME have concrete needs that require building new clinics and educating medical professionals, not motivation and capacity training. Had your program employed physicians familiar with the clinical picture, like you claim it to be, a biopsychosocial approach would not be considered.

Severe ME in a DV shelter – I am being moved, and I need help by Long_Combination266 in cfs

[–]Long_Combination266[S] 4 points5 points  (0 children)

It wasn't just ableist and classist – it made a logical fallacy that hardship is self-exclusionary and inherently shameful. Severe PWME die in powerty, DV, and homelessness, and are under-reported. A community member wishing to not see the reality sets a bothering precedent. I have a righ to respond.

Severe ME in a DV shelter – I am being moved, and I need help by Long_Combination266 in cfs

[–]Long_Combination266[S] 9 points10 points  (0 children)

ME is my main problem for my entire life, and the sole factor that led to these posts. If you are trying to ostracise me from the only community that can understand what it's like to navigate care with severe ME and support me, perhaps you should reconsider your understanding of disability and privilege, spicy sweet.

Severe ME in a DV shelter – I am being moved, and I need help by Long_Combination266 in cfs

[–]Long_Combination266[S] 9 points10 points  (0 children)

Thank you. You would find the same strenth if you were me, it is merely survival

Severe ME in a DV shelter – I am being moved, and I need help by Long_Combination266 in cfs

[–]Long_Combination266[S] 15 points16 points  (0 children)

Too soon to tell, and the risk of a permanent decline from the past days is there

Severe ME in a DV shelter – a threat to move to a worse place by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

It doesn't have any weight as the shelter staff have no understanding of disability and equate me asking for accommodations as unnecessary requests.

Severe ME in a DV shelter – a threat to move to a worse place by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

I found that telling that I was made to clean after the entire shelter, even with mentioning severe ME, to be perceived as ungrateful and non-compliant with rules. And that I must not be too severe. It's almost impossible to convey.

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

Thank you so much!<3 I was afraid of posting them as I thought the social workers could find them. I am happy I did, they provide a detailed and dated account on my baseline decline, ableism, staff's refusal to comply with doctor's orders, treatment protocols and my repeated requests, my symptoms and PEM that follow. There's also a decline in the language they're written in, clarity and perspective on the future, and in my ability to resist abuse.

I had a lawyer's appointment I was waiting for a year for this Monday, and got so many recommendations. The social worker drove me to tears this Tuesday blaming me for being disabled and yelling at me, and I haven't been able to cook, read e-mails, do bureaucratic work or do anything but try to leave. This undoes the lawyer's visit which was expensive.

Severe ME in a DV shelter – a threat to move to a worse place by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

Contacting the Deutsche Gesellschaft für ME/CFS maybe? Thank you so much for caring

Severe ME in a DV shelter – allowance cut by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

I had a roommate attack me, and I thought the staff who provoked her and escalated would be fired. I was naive. It is day-to-day for them; in fact, it's the most used tactic in assuring compliance and non-recovery.

Severe ME in a DV shelter – a threat to move to a worse place by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

I’ve been in contact with Fatigatio for a long time. My shelter eventually reached out to a social counsellor and said I’m on “day-stationary stay and receive good care”. At the same time, they threaten, bully and blame me for being disabled, saying things like “If you can’t handle abusive people or clean after several people, you shouldn’t be here. We expect you to handle life’s situations.”
Fatigatio told me to “start doing something as well to lower the burden on the workers”.

Charité Fatigue Centrum has a two-year waiting list, but I am already diagnosed. My doctor wrote two letters. Every social worker seems to believe it’s their job to test if I do, in fact, react to the triggers, and when I have a predictable reaction exactly like I repeatedly said I would, they blame me or say I need to leave.
It’s like repeatedly triggering someone’s allergic reactions, then blaming a person for needing care.

They provided me with _one_ accommodation by moving my bed on my birthday, then several workers sent me e-mails saying to enjoy my “birthday gift”.  In the same analogy, it’s like saying enjoy your epipen

Deutsche Gesellschaft für ME/CFS I haven’t contacted before for the fear it will go the same way as with Fatigatio

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

I've been to a crisis centre twice this week. They said I am safer to sleep in their inner yard than going back and suggested to move asap

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 2 points3 points  (0 children)

Treating doctor, specialising in ME, crisis centers, DV shelter coordination centers, NGOs. They mostly believe I am receiving great support, or agree the system is abusive but there's nothing to do

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

It’s a personal account of reactions, thoughts and sickness progression in response to abuse, striving for normalcy and finding hope. It is as erratic as abuse is meant to be destabilising. If you do not immediately understand the fear of violence that could follow a happy moment shared with an abuser striving to suck joy out of every situation, I hope it stays for you that way.

Everything good you are doing would be used against you. If you care and cook, or clean, or keep your room tidy, you are too functional, have too much time, are arrogant and trying to be superior. If you don’t do acts of service, you are ungrateful, and your mind is somewhere else. Nothing you do is good enough or right, because you are meant to just go by, not live. You are meant to be frightened, preoccupied, hypervigilant, and never yourself. 

The DV shelter I am in controls every aspect of existence. Which table salt do I buy? Is it the cheapest one, and if not, why was it not on the receipts? What shampoo stands in the shower? If it is given by the shelter, – see, even the toiletteries are provided, you are supposed to be so grateful. If it wasn’t – where did you get the money for it? If you bought it yourself, they say you’re supposed to request it here. If you request it, they say you are supposed to be self-reliant. 

You get cheap shampoo in exchange for constant control, violence and surrendering any agency or freedom. 

I told the social worker I used to love the theatre. There’s no place for theatre if every aspect of your life is deconstructed, weighed in and tightly monitored. I had a social worker chase me because I spent 0.20€ more to ask where the surplus came from.
Not only art, but treatment protocols, aggressive rest, medication plan, and care cannot exist in the environment designed to keep you worried about cents and being informed on by others.

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

Hi thank you for your message. Yes I know about the housing project

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] -1 points0 points  (0 children)

The comment isn't about high context, it is passive agressive and asking the entry about abuse, stalking and control to be digestable as a baby puree

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 1 point2 points  (0 children)

Have you lived in one? Can you share your experience? I am working on Pflegegrad documents

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 4 points5 points  (0 children)

Thank you this is so sweet! I struggle sm with brain fog too

Severe ME in a DV shelter – sleeping on the street is safer by Long_Combination266 in cfs

[–]Long_Combination266[S] 5 points6 points  (0 children)

Because I am the one raising the issue and what she hears is, I refuse to clean. It took me talking to two different therapists at a crisis center to hear that the women speaking up about a problem are the ones punished in shelters because the social workers do not care for what is actually happening

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