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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Is there anything like the mayo clinic in the UK/Europe?

Apple

Apple

Senior Member
Messages
217
Location
UK
Not a CFS specialist. Somewhere you can stay for a week or two and get a FULL work up. A doctor or a team of doctors looking at the whole picture, not just their little area.

I have 30+ different symptoms. Some overlapping, some not. I've had confirmed inflammation in my bladder, bowel, nose, ears and blood at different times. but the gastro is not interested in the bladder inflammation, the uro is not interested in the gi inflammation, my GP just sort of shrugs it all off as it's not apparently not severe enough to be a 'problem'. My uro tells me that my bladder symptoms are partially neurological but does not want to refer me to a neuro and neither does my GP.

I have rheumatological symptoms, neurological symptoms, immunological symptoms, bladder problems, GI problems, cardiac symptoms, autonomic issues, balance issues. Symptoms that don't really fit anywhere. Some fit the diagnosis of ME, Some don't. But no-one is willing to sit down and look at all of it together; the BIG picture. A 10 minute GP appointment is useless. One blood test a year or so is the best I get. No-one is interested. My GP doesn't want to refer me anywhere else as I've seen enough consultants (i've seen 3 in 7 years!)

I've lost half my teens and most of my twenties and i've had enough. I just want some help. :(
 
Cheesus

Cheesus

Senior Member
Messages
1,292
Location
UK
I also need this. I have unusual symptoms that do not fall under the diagnosis of ME that need to be investigated, but I cannot even find anyone who accepts that the symptoms are part of their field of medicine, never mind get someone to actually investigate them.
 
Apple

Apple

Senior Member
Messages
217
Location
UK
Cheesus said:
I also need this. I have unusual symptoms that do not fall under the diagnosis of ME that need to be investigated, but I cannot even find anyone who accepts that the symptoms are part of their field of medicine, never mind get someone to actually investigate them.
Click to expand...

It really, really sucks. I know American healthcare has a LOT of problems, but I envy it so much. At least if you have a bad experience with a doctor, you can go and get a second (or third or fourth) opinion without being seen as annoying, NHS money wasting patient. :rolleyes:

When I win the lottery, I will fly us both to the mayo or wherever in a private jet. :rocket:
 
Hip

Hip

Senior Member
Messages
17,858
Apple said:
But no-one is willing to sit down and look at all of it together; the BIG picture.
Click to expand...

There may not necessarily be a big picture. You may just have a series of illnesses/conditions, each of which contributes some symptoms, but these illnesses may be independent of each other.

As an example of independent illnesses:

My first health problems started with irritable bladder (overactive bladder). Some 6 years later, I then developed irritable bowel syndrome, which also triggered significant anxiety (which IBS is apt to do), and some fatigue in the morning. A few years after, I started getting recurrent urinary tract infections, which would cause a lot of fatigue for a few days each time the infection recurred.

A few years after that, I caught the virus that would later trigger my ME/CFS; but the first major symptoms this virus triggered in me were anhedonia, emotional flatness and extreme anxiety. Then around 18 months later, I was hit by what appeared to be viral meningitis, probably from the same virus. This meningitis left me with severe ADHD, and some personality change (which meningitis is apt to do). After the meningitis, I soon descended into full ME/CFS.

Now, if I want to treat all my symptoms and conditions, each condition, and sometimes each symptom, has to be dealt with separately. Treatments that work for IBS do not help my ADHD, for example. And in the case of all my ME/CFS symptoms, there is no one treatment for all of those, but I have found some supplements and drugs that do help specific ME/CFS symptoms.


The trick is to try to group your various symptoms into specific illnesses/conditions. That way, you can try to target each condition with treatments known to help it.
 
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