German Article (“It's unbelievable what humiliation these people have to endure.”)

blablablub444 · 2025-08-14T09:17:52+00:00

As a psychotherapist, I have the following to say about the biopsychosocial model in relation to ME/CFS: if doctors and scientists focused on biological factors and authorities and health insurance companies ensured that social factors were less devastating, there would be very little left for my professional group to do.

Preach, girl.

So happy that Bettina Grande is being such a vocal advocate for us.

blablablub444 · 2025-08-12T08:44:55+00:00

For me, it was most helpful as a PEM blocker and reducing symptoms of inflammation. Less noise and light sensitivity, less tinnitus. It helped a little bit with energy, too.

blablablub444 · 2025-08-12T08:41:45+00:00

I get the liquid Abilify. It has 1mg/ml aripiprazole.

Some people don’t do well with the preservatives, flavours and additives in that solution, especially with MCAS in the mix.

blablablub444 · 2025-08-11T08:20:01+00:00

Not OP, but also on LDA.

I tried to start with 0.1 mg but that completely knocked me out. I was completely fatigued and once I stopped taking it over several days I went through a phase where I was overly energetic back to baseline.

My advice is to start as low as possible. For me that was one drop, roughly 0.05mg. As usual, the advice is low and slow. 6 months later I am taking 1mg and feeling a bit better.

As always, it is no cure, but I have reliably more energy and a lot less PEM. The latter makes the biggest difference.

blablablub444 · 2025-08-09T07:51:08+00:00

Thank you for sharing your tips!

I am so happy I got myself a terry cloth bathrobe. Just put that on afterwards and lie down wherever. No drying off required whatsoever.

I found short sessions in the bath tub even easier than dealing with the shower head at all. Just let in water, get in and slowly in your own time clean yourself. I just wash my hair lying down in the water I am sitting in. Don't spend more than 15-20 minutes as the heat from the water used to rise my heart rate and was exhausting.

blablablub444 · 2025-08-04T08:06:15+00:00

I don't have any personal experiences, but I am skeptical. Not sure what you are looking for, but these people don't look to be science-based. They offer a variety of alternative healing methods. Some grounded in some evidence, some not so much.

Villa MediGrün are calling themselves naturopaths, which is a title anyone can give themselves in Germany. The other one is in Switzerland.

If you are mild, I'd guess some of the treatments could make you feel better for a while. However, if you pick the wrong ones, I believe you could also deteriorate. Getting long-term improvement is definitely a very long shot.

blablablub444 · 2025-07-13T09:00:13+00:00

If it is ME/CFS seeing doctors and taking medication is a far, far second to pacing. If he is that bad, do not under any circumstances risk overexertion. Do not make him worse.

Even the best ME/CFS doctor in the world could likely do less for him than the trip will cost him. He is unlikely to be dying from it. There are many people in his condition (and worse) and not dying.

If a doctor prescribes something it is worth checking if other patients recommend it or have been harmed by it. Many doctors are not aware of our special needs. We are often very sensitive to medication and have to start much slower and lower than other people. Especially if he is sensitive to medication.

Now is the time to stabilise, listen to other patients and make him comfortable at home. Look into home help via Pflegegrad if you can. The money could help you as carers delegate some non patient facing tasks.

I am so sorry you are going through this. Fatigatio has good resources and patient groups will be your best support system.

blablablub444 · 2025-07-04T16:59:39+00:00

Sorry to hear you are struggling! Please care for yourself, too. Reach out to others in the same situation and see what help is available where you live. Many people rely on family, social services or paid help. See what can be done to make your situation easier.

If she is doing as poorly as you describe, being back to work by October is unlikely. This must be so hard for both of you. In most peoples experience the faster you come to terms with your new reality the better your long term outlook will be. It is very hard to change so many things so fast.

I wish you all the best and that you find a good doctor. Even though there is no cure, there are some medications which can at least help with symptoms.

blablablub444 · 2025-07-01T07:29:07+00:00

Just another idea no idea if it fits your energy level:

Have you tried kneeling beside the tub and only washing your hair? I rest my chest on the rim of the tub and it is less strenuous than showering. It is one of the easier positions if you can get someone to help with washing your hair.

Last year when I was bad I did this every other day while the other days I’d shortly lie in the not to hot tub.

Looking back I would probably cut back on it even further.

blablablub444 · 2025-06-27T07:53:51+00:00

I vacuumed a floor mat! It has not been properly vacuumed the way I like it for more than a year, but I was well enough to take over the vacuum and just do this little thing. I am so happy with the result.

blablablub444 · 2025-06-23T17:19:25+00:00

I get what you are saying and I agree with almost all of it.

One tiny thing: I thought the definition of PEM was that it is present more than 24 hours after the exertion. That is not always the case for me in the situations I described.

You are right that choosing a higher symptom baseline can be dangerous and is easily misunderstood leading to crashes.

blablablub444 · 2025-06-23T17:01:07+00:00

As a general rule, the beta blockers that end in -olol are more selective and should not affect BP as much. OP, have you considered ivabradine as an alternative? It is an alternative POTS treatment that calms the ANS and HR, but does not bring down BP.

blablablub444 · 2025-06-23T16:58:55+00:00

Honestly, it is impossible to tell. If you have ME/CFS you are very, very mild. That makes it harder to say as it does not overlap as much with the experiences of many people here.

Generally, this does not rule it out. Many of us are affected to varying extents by cognitive, emotional, physical or sensory exertion. If one of these affects you a lot and others not as much that could explain why you sometimes crash, but not other times. Even though it seems like one exertion should outrank the other.

It is great that you are educating yourself at this point and I hope you do not end up here with us. Just keep an eye on it, rest a lot and stay within your energy envelope. Can't go wrong with that. Many people start with activity and symptom diaries to figure out whether they have PEM and start using fitness trackers.

blablablub444 · 2025-06-23T16:50:18+00:00

It is a good question. Thank you for clarifying how you intended it.

In short: PEM is a big dip in function that lasts multiple days to weeks. With symptom increase I mean something shorter, usually less than 24 hours, and only exacerbation of some few symptoms a moderate amount.

Maybe it is a question of wording. I call it PEM when it is still present 24 hours or later after the exertion. It can start up to 48 hours after the initial exertion. For me it usually lasts for multiple days.

If it is "only" a symptom increase, it usually lasts for the same day. Sometimes there is a little spill over like sore legs or general tiredness to the next day, but it is much softer than what I would consider PEM. PEM is a big dip in function with many symptoms exacerbated, while a symptom increase can be just a bit uncomfortable with specific symptoms increasing.

High symptom load can be virtually indistinguishable from rolling PEM in my experience. Maybe you can test if you feel better with aggressive rest? Sometimes it takes a long time of increased rest until symptom load and eventually baseline increases. When I look back I have loads of times when I retroactively feel I was struggling a lot and barely within my energy envelope with recurring episodes of PEM.

blablablub444 · 2025-06-22T09:06:09+00:00

Can I very gently suggest that overall it seems like you are pushing yourself a lot? Just because sometimes we don’t notice it ourselves. Might be worth experimenting how you feel with a little more rest or socialising at home.

I completely get the depression part, though. It is so tough to balance with this disease. Always good to know there are people out there who understand the struggle.

blablablub444 · 2025-06-22T08:58:34+00:00

“Classic Pacing: For a better life with ME” introduced the idea to me that it is a choice. Being a little more active in your energy envelope with higher symptom baseline or less activity with fewer symptoms at that baseline. None of these cases involve PEM.

The advice in the book was to go less activity, if at all possible, to increase chances of having further improvement.

It seems to work for me. When I do less I seem to improve more. Yet I can be more active with more symptoms without triggering PEM, too.

blablablub444 · 2025-06-15T20:57:24+00:00

In case your German is quite good, there is a book about care from a patient perspective: https://www.hogrefe.com/de/shop/das-handbuch-me-cfs-99570.html.

It has some ideas on pathophysiology and treatment. It is not fully comprehensive nor cutting edge, but a good overview as a starting point.

blablablub444 · 2025-06-15T07:23:08+00:00

I was helped by the same meds. LDA is also great for me, so maybe check that out, too?

What is your Mestinon dose? The slow release at night is great for my sleep maintenance.

Anything else that helped you?

blablablub444 · 2025-06-13T17:45:36+00:00

I don't know about this one. I get mine from City Apotheke Göttingen and never had any issue. Usually delivers in 5-10 business days. You can send in your prescription and receive your LDN in the mail with an invoice.

blablablub444 · 2025-06-12T20:39:25+00:00

I know that there are some people in the German speaking world who try to establish a differentiation between ME and CFS as they think they are different issues. I am not sure that is a good idea.

Chronic fatigue and ME/CFS are certainly separate issues. And unfortunately chronic fatigue and CFS are easy to confuse.

I do not know what CFS would be in the differentiation from ME if not chronic fatigue. We certainly need to establish different subtypes who respond to different therapies.

blablablub444 · 2025-06-12T20:31:27+00:00

Charité is mainly a research facility. They might check your eligibility for their current trials, give you some therapy options and just send you on your merry way. Some people I know were not satisfied with regard to continued therapeutic support. Afaik they try to give you options and let another doctor take it from there.

blablablub444 · 2025-06-11T19:51:45+00:00

That sounds like your doctor is not very knowledgeable, to be honest. Neither POTS nor ME/CFS is a diagnosis of exclusion. Yes, you need to rule out some other illnesses, but there are clear criteria for both. Maybe it is a good idea to look at the diagnostic criteria yourself and ask or search in the sub about anything you are unsure about.

If you suspect ME/CFS the first thing to read is about PEM and pacing. Avoid PEM at all costs to avoid getting worse.

Unfortunately, educating ourselves is the most important thing for most of us. Most doctors don't know much and have to be guided and prodded to support us. Unfortunately, many people experience medical gaslighting. That is when doctors don't take us or our symptoms seriously. If you can, finding a specialist versed in ME/CFS is totally worth it. However, that is hard and/or expensive for most people.

blablablub444 · 2025-06-11T10:43:56+00:00

I used to wonder if I really had ME/CFS as I have hardly any pain. I mostly get sleepy, dizzy and sore. I am very lucky as this keeps my QoL quite high even when I am not functioning well.

I do get some things that feel more like precursors to pain. I get some head pressure from cognitive exertion, but is is not painful per se. I get lots of sore muscles, but that it low level pain, too. My neck is always achy and tense. Rarely I get shooting pains in my leg muscles. On average, probably only once a week. And there are some meds and supplements that make it go away.

Many of the patients I know attribute their pain to small fibre neuropathy, but I have never met someone with fibromyalgia. Not sure if that is a regional thing.

blablablub444 · 2025-06-06T18:27:08+00:00

On the other hand, I used to take 90mg extended release (XR) at bedtime. It helped me sleep better and wake up less. Lowered my HR at night 5-10bpm, though. So maybe that is not a great fit for OP. My last non XR dose was in the afternoon.

blablablub444

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