Contradicting information about ME/CFS

[SWAlexander]

The more I read about ME/CFS, the more I´m confused.

The Charite in Germany is making this statement:
How to Make a Diagnosis of CFS

There is currently no specific test for CFS in clinical diagnostics, so the diagnosis is made on the basis of clinical symptoms. CFS is also a so-called exclusion diagnosis since chronic fatigue is also a symptom of many other diseases and is then usually treated differently.

Before the diagnosis of CFS can be made, other diseases must therefore be ruled out before the presentation to us

Which includes:

• Internal diseases (CT / X-ray chest, CT abdomen, EKG / echo, laboratory: blood count, liver values, creatinine, electrolytes, HbA1c, CRP, ferritin)

• Chronic infections (hepatitis B / C, borreliosis, HIV)
• Endocrinological disease (thyroid, adrenal gland)
• Gastrointestinal illness with abdominal complaints
• Endogenous depression
• Neurological disease with neurological symptoms
• For joint and muscle pain: rheumatological disease
• If sleep apnea is suspected: sleep laboratory examination

See original Statement (in German): https://cfc.charite.de/fuer_patienten/

The Charite in Germany gives no definition about their understanding and what they are looking for, to diagnose ME/CFS

All comments and explanations are appreciated.

 

[Martin aka paused||M.E.]

The more I read about ME/CFS, the more I´m confused.

The Charite in Germany is making this statement:
How to Make a Diagnosis of CFS

There is currently no specific test for CFS in clinical diagnostics, so the diagnosis is made on the basis of clinical symptoms. CFS is also a so-called exclusion diagnosis since chronic fatigue is also a symptom of many other diseases and is then usually treated differently.

Before the diagnosis of CFS can be made, other diseases must therefore be ruled out before the presentation to us

Which includes:

• Internal diseases (CT / X-ray chest, CT abdomen, EKG / echo, laboratory: blood count, liver values, creatinine, electrolytes, HbA1c, CRP, ferritin)

• Chronic infections (hepatitis B / C, borreliosis, HIV)
• Endocrinological disease (thyroid, adrenal gland)
• Gastrointestinal illness with abdominal complaints
• Endogenous depression
• Neurological disease with neurological symptoms
• For joint and muscle pain: rheumatological disease
• If sleep apnea is suspected: sleep laboratory examination

See original Statement (in German): https://cfc.charite.de/fuer_patienten/

The Charite in Germany gives no definition about their understanding and what they are looking for, to diagnose ME/CFS

All comments and explanations are appreciated.

Please take it with a grain of salt. If I just read “ Chronic infections” as an exclusion criterion it makes me scrape my head

 

[nerd]

The Charitè center for CFS/ME is overburdened with patient requests. It's just their way of making sure they don't get patients that would better be served by other specialty centers of the Charitè. Unfortunately, most of the comorbidities aren't checked by physicians.

 

[Martin aka paused||M.E.]

The Charitè center for CFS/ME is overburdened with patient requests. It's just their way of making sure they don't get patients that would better be served by other specialty centers of the Charitè. Unfortunately, most of the comorbidities aren't checked by physicians.

Thank you! You point towards the direct problem. I want to add that many if not most doctors are NOT UP DO DATE to accurately diagnose for persistent infections

 

[SWAlexander]

Please take it with a grain of salt. If I just read “ Chronic infections” as an exclusion criterion it makes me scrape my head

Is there any reliable medical facility in Germany for ME/CFS?

 

[Martin aka paused||M.E.]

Is there any reliable medical facility in Germany for ME/CFS?

Just one word: No!

 

[SWAlexander]

The Charitè center for CFS/ME is overburdened with patient requests. It's just their way of making sure they don't get patients that would better be served by other specialty centers of the Charitè. Unfortunately, most of the comorbidities aren't checked by physicians.

Here it is: "Unfortunately, most of the comorbidities aren't checked by physicians."
I´m so tired of so many incompetent doctors.

 

[SWAlexander]

Just one word: No!

www.mecfs.de has nothing new, except a Charite seminar only for professionals. Are we in Germany considered collateral damage?

 

[Martin aka paused||M.E.]

Here it is: "Unfortunately, most of the comorbidities aren't checked by physicians."
I´m so tired of so many incompetent doctors.

It's the same here. So I had to learn many things about microbiology (read medical specialist lecture) but more importantly keep up to date with recent studies. I think PolyBio does the best job atm as it comes to pathogens and their role in all the what I consider as downstream effects in chronic inflammatory illnesses.

 

[SWAlexander]

Thank you! You point towards the direct problem. I want to add that many if not most doctors are NOT UP DO DATE to accurately diagnose for persistent infections

I know all too well. I´m waiting since Feb. for an appointment with a dermatologist. I have either Sperophytosis, Coxsackie, or Herpes, on top of psoriasis. These tiny red dots appeared at the same time as the thrombosis. Looks like capillaries bleating out like ink on tissue paper.

 

[Martin aka paused||M.E.]

I know all too well. I´m waiting since Feb. for an appointment with a dermatologist. I have either Sperophytosis, Coxsackie, or Herpes, on top of psoriasis. These tiny red dots appeared at the same time as the thrombosis. Looks like capillaries bleating out like ink on tissue paper.

That looks more like an emergency you could go to an emergency appointment. But I can assure you with about 95% that you'll get a steroid cream.

I also have psoriasis (dormant since my worsening) and think there is an immunological connection to ME

 

[SWAlexander]

It's the same here. So I had to learn many things about microbiology (read medical specialist lecture) but more importantly keep up to date with recent studies. I think PolyBio does the best job atm as it comes to pathogens and their role in all the what I consider as downstream effects in chronic inflammatory illnesses.

you are so right it is "downstream effects in chronic inflammatory illnesses", and patients are drowning in pain.

 

[SWAlexander]

That looks more like an emergency you could go to an emergency appointment. But I can assure you with about 95% that you'll get a steroid cream.

I also have psoriasis (dormant since my worsening) and think there is an immunological connection to ME

There is no emergency appointment for me. Anytime a doctor reads my history the room becomes dark and silend. Most of them can not read enough English to understand med history. I think they hope I die because I´m old enough.

Same here "psoriasis (dormant since my worsening)". My psoriasis disappeared and this monster (pict) showed up.

 

[Martin aka paused||M.E.]

you are so right it is "downstream effects in chronic inflammatory illnesses", and patients are drowning in pain.

I would recommend to watch PolyBio's videos. I turned being a fan of this foundation and the researchers. Much more profound that what I get from other research groups. Especially Amy is one to watch!!

 

[Martin aka paused||M.E.]

There is no emergency appointment for me. Anytime a doctor reads my history the room becomes dark and silend. Most of them can not read enough English to understand med history. I think they hope I die because I´m old enough.

Yeah I'm sorry to hear that! I heard it a hundred times and it always makes me feel powerless to help. If you need anything I can help with let me know.

 

[SWAlexander]

Yeah I'm sorry to hear that! I heard it a hundred times and it always makes me feel powerless to help. If you need anything I can help with let me know.

Verry sorry, if I made you uncomfortable. All I need is a dr with brain and empathy.

 

[Martin aka paused||M.E.]

Verry sorry, if I made you uncomfortable. All I need is a dr with brain and empathy.

We all do. I hope you find one!

 

[SWAlexander]

I would recommend to watch PolyBio's videos. I turned being a fan of this foundation and the researchers. Much more profound that what I get from other research groups. Especially Amy is one to watch!!

Is it possible to post a link to PolyBio's ?

Did anybody read this?: Frontiers | The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Critical Review | Medicine (frontiersin.org)

 

[Martin aka paused||M.E.]

Is it possible to post a link to PolyBio's ?

Did anybody read this?: Frontiers | The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Critical Review | Medicine (frontiersin.org)

yes i have read it multiple times. A good study!
https://polybio.org/

 

[SWAlexander]

yes i have read it multiple times. A good study!
https://polybio.org/

Thanks for the link.