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Rheumatologist or Neurologist POLL/DEBATE

In your opinion who in mainstrem medicine could better treat CFS/ME if they are open minded?

  • Rheumatologist

    Votes: 7 41.2%
  • Neurologist

    Votes: 10 58.8%

  • Total voters
    17
  • Poll closed .

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
This POLL/DEBATE: is more geared toward those of us that have not been able to travel for what ever reason,
to one of the nationally recognized CFS/ME specialists..

And why you believe one is better than the other?

My pick without hesitation is a Neurologist.

Why?
CFS/ME has everything to do with Neurology..

Main stream medicine is clearly "unaware" for some odd reason,IMO..
If you search for CFS/ME doctors you will find that Rheumatologists out number Neurologists about 10 to 1.
IMO
Rheumatologists are by title, basically chronic mild to "low moderate" pain doctors who prescribe everything
except narcotics which is the only medicine that can properly manage moderate to severe pain.


Once I had visited a Rheumatologist,I quickly learned that they basically only recognize the the wide spread
body pain of CFS/ME which is labeled as Fibromyalgia..

If you can find a Neurologist that is willing to be your PCP or act as one after at least a year of trying to give your condition a name through extensive testing..I say do it..

It is we that can change this debacle one by one searching for open minded Neurologists.
IMO
 

Kati

Patient in training
Messages
5,497
Hi, @Tired of being sick thx for this poll question. i really wished you had a third answer, like a new medical specialty like neuro-immunology.

Neurology and rheumatology as they are currently are pretty adamant that ME does not belong to their departments. My best choice between the 2 would be neurology due to the increasing evidence of neuro-inflammation and they are caring for patients with loosely similar diseases, namely MS, perhaps Alzeimer's and Parkinson's.

In Canada rheumatologists have decided they would no longer care for patients with fibromyalgia, leaving this diseases 'orphan' that is without any medical specialty.

My option would be for the medical structure to make a new medical specialty to include multi-systemic diseases like ME, FM, Lyme and other diseases which is not typically embraced by one medical specialty.
 

Gingergrrl

Senior Member
Messages
16,171
I also was not sure how to answer this poll as the doctors who have helped me most are my CFS specialist (whose background is as an internist and infectious disease specialist) and also my cardiologist and endocrinologist and prior to that my naturopath. Ironically, I have never seen the two specialties that you mentioned for CFS (but I did see a neurologist- actually several of them- in 2010 for my Levaquin/tendon injuries.)

ETA- It seems like we need someone in infectious disease and immunology who also understands autonomic issues?
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
Given that autonomic dysfunction is being shown to play such a large role in ME/CFS for a large percentage of the patients, it would seem that neurologists should be a player in all this since the autonomic system is part of the NERVOUS system. However, I had nothing but frustration trying to find a local neurologist who would even address that limited part of the disease. I had to travel cross country to one of the big autonomic centers to get that diagnosis long before I traveled to see an ME/CFS doc.

I'm with the others who think we'll need a new arena of neuroimmunology or neuro-immune-endocrinology, along with some genomic medicine involved to treat us.
 

Gingergrrl

Senior Member
Messages
16,171
It's so interesting b/c I have been equating autonomic dysfunction with cardiology not neurology but that makes so much sense. Sadly there are no neurologists that I know of in my city who are familiar with CFS or dysautonomia whereas I found a cardiologist who was.
 

Kati

Patient in training
Messages
5,497
I am finding out that young graduates and undergraduates are much more openminded than the older generation of physicians who have learnt medicine by the book. Of course not all of them doctors but it applies to a lot of them from my personal experience.

We need a fresh generation of thinkers.
 

barbc56

Senior Member
Messages
3,657
I am currently being treated by a neurologist.

I think the kind of doctor many patients choose depends on your symptoms. My symptoms are mostly neurological. That being said many of us have symptoms all over the place which can make this decision complicated.

Barb
 

Kati

Patient in training
Messages
5,497
A curious internist connected with all kinds of specialties would be very useful. Take Dr Peterson as an example. He's a generalist, and dedicated most of his career to ME. He used all the knowledge he had to help his patients and when he ran out of knowledge, he studied, researched, and asked for help. A truly special man.
 

Cheshire

Senior Member
Messages
1,129
Some of us don't suffer from disabling pain, so a Rheumatologist would be of no help.

Neurology would be more adapted, but unfortunately, I think neurologists are the more prone to dismiss patients when there is no evident pathology and to get rid of those "hysterical" cases by sending them to the psychiatrist.

I agree with the others, we need a kind of neuro-immune specialist.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
If M.E turns out to be an autoimmune disease then surely it will go with rheumatology? M.e has a lot of overlaps with MS (neurology) but also Lupus and other connective tissue disorders (rheumatology).

Immunology I guess would also be useful given a lot of the diverse immunological findings. I think like Lupus patients who have multi system dysfunction (joints, but also CNS Lupus and lungs and heart) we may need to have specialists who can overlap, look at all areas and refer on where necessary. Lupus is definitely with the rhumies, but they also work with cardiologists, pulmonary specialists and neurologists.
 

zzz

Senior Member
Messages
675
Location
Oregon
About twenty years ago, Dr. Jay Goldstein saw the same problem that's being described here. His solution was to create a new field of medicine - neurosomatic medicine - and he became its first (and only) practitioner. As you can tell by the names of his most recent two books (Betrayal by the Brain and Tuning the Brain), he saw the brain as the center of this illness, which makes sense if you think that this illness should be called "myalgic encephalomyelitis". It also makes sense when you consider that by the end of his practice, he was able to either mostly or completely relieve the symptoms of at least 97% of his patients. He basically wanted to take the "psycho" out of "psychosomatic medicine". (Those are my words, not his.) He had the same objections to psychosomatic medicine that the people here do, though he was originally trained as a psychiatrist. Instead of psychosomatic medicine, he saw neurosomatic medicine as encompassing diseases such as CFS, FMS, IBS, MCS ("all the esses", he said), as well as chronic Lyme disease and autoimmune diseases, among others. Basically, any multi-system illness that could be treated via the brain was considered to be a proper subject for neurosomatic medicine.

One striking example of the power of this paradigm is described on page 93 of Betrayal by the Brain. He was treating a woman for CFS and fibromyalgia; she also had Sjögren's and lupus. Not only did her symptoms of CFS and fibromyalgia resolve in the first office visit (which happened with about 50% of Dr. Goldstein's patients), but over the next three months, all signs of lupus resolved, and her anti-ds DNA test became negative.

In other words, she was cured of lupus by the very same treatment that resolved her CFS symptoms. The phrase "cured of lupus" is not one you hear often. Dr. Goldstein hypothesizes, "Probably this patient improved because her medications enhanced central and peripheral noradrenergic neurotransmission, with resultant immunosuppression." He goes into more detail, and then concludes, "It is reasonable to assume that a neurosomatic treatment protocol could ameliorate autoimmune disease, and I have applied for a grant to test this hypothesis in a controlled experiment in patients with SLE [systemic lupus erythematosus]."

The grant application was not approved. None of Dr Goldstein's grant applications were ever approved. No one could understand what he was doing.

But here in neurosomatic medicine you have an interdisciplinary field that covers a whole range of illnesses that are not being properly handled today. And neurosomatic medicine comes with a wide variety of treatments that have been tested on over 20,000 patients. Many, many people said that Dr. Goldstein was years ahead of his time - decades, in my opinion. He was willing, even eager, to train doctors as neurosomaticists, but they had to pay their own way; Dr. Goldstein could not afford to support them. He had no applicants.

So I think that neurosomatic medicine is really what people here are looking for. It just needs professionals to bring it fully to life and to bring its benefits to patients.
 
Last edited:

ukxmrv

Senior Member
Messages
4,413
Location
London
What about an option of an Immunologist or an Infectious Diseases consultant?

Up to now the best treatments for me have been anti-viral drugs and immune modulators. I'd need a doctor experienced with these.
An example of an Immunologist would have been someone like Prof Mowbray of St Marys London.

In action here

"Circa 1996, an autopsy was performed on a woman with Myalgic Encephalomyelitis in
Newcastle-upon- Tyne by Dr John Richardson and the brain tissue examined by Dr. James
Mobray at St Mary's Paddington. This woman had a history of typical Myalgic
Encephalomyelitis, was well known by Dr Richardson and accidentally died when her car fell off
the side of the pier into the North Atlantic, the cold water preserving the brain tissue. Dr
Mowbray was able to demonstrate an autoimmune inflammatory injury at the capillary level of
the brain and basement membrane, the area that separates the capillaries from the neurons
and brain tissue. In effect the same juxtaposition as in poliomyelitis but in this case in the
brain and not in the spinal cord. (Poliovirus also injures the sub cortical areas of the brain.)"

and here

"1987: in his Medical Address at the AGM of the ME Association on 25th April 1987, James Mowbray, Professor of Immunopathology, St Mary’s Hospital Medical School, London, said: “When we meet a new infection…the first thing we do is to make IgM antibodies and then in a matter of a few weeks we switch over and make IgG antibodies (which) last for a long time and protect us. If someone has IgM antibodies they have either been recently infected or they are still infected….

We developed a technique using a specialised antibody…which detects a protein in enteroviruses which is the same in all 72 enteroviruses (and) we can use that antibody to look for the virus protein in the blood. Doing that, we have been able to find a very large fraction of the ME patients have got an enterovirus antigen….Just because you find virus proteins in the blood, does that mean they are infected? Yes, it does….The virus is present in the intestine. It is also shown to be present in the muscle….Here is a muscle biopsy where you see the dark brown infective muscle cells, where the probe has bound to the virus genes in the muscle cell. (There are) two ways which demonstrate that in the muscle (in) a patient with ME, there is an enterovirus….What does it do in the muscle?….(It) does the thing that viruses usually do, they infect the cell and take over…saying ‘You must switch off all your genes and read only my genes’.

So (the virus) switches off all the genes that produce energy to the cells….The virus is being made and is switching off host genes stopping the cells’ own energy production. If you now exercise, you rapidly run out of energy in the muscle and that has been shown by sophisticated techniques….

Whilst (the virus) is there, it severely limits the ability of the muscle to work….The thing that seems to make it worse is exhausting the muscle….Sufferers know, they have a kind of feeling for it, especially as time goes on, about what is going to be too much….When you have got the disease it is a good basis for saying do not use up all the muscle energy, do not get to that stage. It may lead to more virus affecting that muscle….It is clear that it is not only exhaustion in the muscle but also in the brain….Either muscle or brain overdoing it is the same….if you live within the limits of the disease while you have got the disease, I think you will do much better and we have now got some good scientific background”.
 
Messages
15,786
The doctor who has helped me most is a cardiologist, but is treating the immune and infectious aspects primarily.

I think we just need intelligent and open-minded doctors who aren't egotistical gits ... specialism seems relatively unimportant at this stage.
 

Gingergrrl

Senior Member
Messages
16,171
The doctor who has helped me most is a cardiologist, but is treating the immune and infectious aspects primarily. I think we just need intelligent and open-minded doctors who aren't egotistical gits ... specialism seems relatively unimportant at this stage.

I think you are totally right and if a doctor takes up a special interest in ME and is intelligent and open-minded, I don't think the specialty or their background really matters. We are still too early in the game for that and you never know who will be the doctor that can help you.
 

Strawberry

Senior Member
Messages
2,088
Location
Seattle, WA USA
I voted neurologist, and broke the tie. :) My rheumatologist told me I didn't have anything she could treat. While my neurologist said it didn't appear likely that I had MS, he did say I have holes in the myelin sheath on the brain. It may truly come down to what the root cause is. For me, I definitely have viral triggers, but I also have MCS, and myelin damage. So I am a square peg trying to fit in a round hole. We don't need specialists, we need either teams of specialist, or a well educated doctor. I agree with Kati that we need a new generation of thinkers.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
I regularly see a rheumy.
I have seen neurologists.( 1 that specialized in ME/CFS) They like to do tests. They do not seem to like to treat.
Rheumy will treat symptoms and read and try new things. Works for me.

That said, I think it depends on the individual dr. I got lucky
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I regularly see a rheumy.
I have seen neurologists.( 1 that specialized in ME/CFS) They like to do tests. They do not seem to like to treat.
Rheumy will treat symptoms and read and try new things. Works for me.

That said, I think it depends on the individual dr. I got lucky

Exactly what symptoms will your Rheumy treat?
 

beaker

ME/cfs 1986
Messages
773
Location
USA
Exactly what symptoms will your Rheumy treat?
With meds ? Pain, sleep, right now.
He has been open to tying most ME/CFS treatments that come up ( Valcyte, Flurinef, to name a couple )
And to run tests if they will lead to a treatment that might help.
He will refer me out to other specialist for other things( i.e. vision problems, vertigo) and my PCP is also very helpful and handles the gastro stuff,etc.. Although I have been to gastro specialists over the years too.
It's nice to have someone that will read the research and takes things seriously. I bring him papers and such and he will point out ones I missed to me. Like I said. I'm lucky.
 
Last edited:

knackers323

Senior Member
Messages
1,625
What about an option of an Immunologist or an Infectious Diseases consultant?

Up to now the best treatments for me have been anti-viral drugs and immune modulators. I'd need a doctor experienced with these.
An example of an Immunologist would have been someone like Prof Mowbray of St Marys London.

In action here

"Circa 1996, an autopsy was performed on a woman with Myalgic Encephalomyelitis in
Newcastle-upon- Tyne by Dr John Richardson and the brain tissue examined by Dr. James
Mobray at St Mary's Paddington. This woman had a history of typical Myalgic
Encephalomyelitis, was well known by Dr Richardson and accidentally died when her car fell off
the side of the pier into the North Atlantic, the cold water preserving the brain tissue. Dr
Mowbray was able to demonstrate an autoimmune inflammatory injury at the capillary level of
the brain and basement membrane, the area that separates the capillaries from the neurons
and brain tissue. In effect the same juxtaposition as in poliomyelitis but in this case in the
brain and not in the spinal cord. (Poliovirus also injures the sub cortical areas of the brain.)"

and here

"1987: in his Medical Address at the AGM of the ME Association on 25th April 1987, James Mowbray, Professor of Immunopathology, St Mary’s Hospital Medical School, London, said: “When we meet a new infection…the first thing we do is to make IgM antibodies and then in a matter of a few weeks we switch over and make IgG antibodies (which) last for a long time and protect us. If someone has IgM antibodies they have either been recently infected or they are still infected….

We developed a technique using a specialised antibody…which detects a protein in enteroviruses which is the same in all 72 enteroviruses (and) we can use that antibody to look for the virus protein in the blood. Doing that, we have been able to find a very large fraction of the ME patients have got an enterovirus antigen….Just because you find virus proteins in the blood, does that mean they are infected? Yes, it does….The virus is present in the intestine. It is also shown to be present in the muscle….Here is a muscle biopsy where you see the dark brown infective muscle cells, where the probe has bound to the virus genes in the muscle cell. (There are) two ways which demonstrate that in the muscle (in) a patient with ME, there is an enterovirus….What does it do in the muscle?….(It) does the thing that viruses usually do, they infect the cell and take over…saying ‘You must switch off all your genes and read only my genes’.

Anyone know if this enterivirus test is commercially available?

So (the virus) switches off all the genes that produce energy to the cells….The virus is being made and is switching off host genes stopping the cells’ own energy production. If you now exercise, you rapidly run out of energy in the muscle and that has been shown by sophisticated techniques….

Whilst (the virus) is there, it severely limits the ability of the muscle to work….The thing that seems to make it worse is exhausting the muscle….Sufferers know, they have a kind of feeling for it, especially as time goes on, about what is going to be too much….When you have got the disease it is a good basis for saying do not use up all the muscle energy, do not get to that stage. It may lead to more virus affecting that muscle….It is clear that it is not only exhaustion in the muscle but also in the brain….Either muscle or brain overdoing it is the same….if you live within the limits of the disease while you have got the disease, I think you will do much better and we have now got some good scientific background”.