Link Btw Cfs And Dysautonomia

[masumeh]

I wanted to share this interesting med article I found. The full text is long, but these points were pretty much self explanatory for us, I think, since it basically describes many of us. The part I found most interesting was the, "Final pathway for CFS is dysautonomia," bc I didn't know that the relationship worked that way, like this doc seems to be proposing that all CFS sufferers are dysautonomia sufferers.

ME/CFS RESEARCH FORUM REPORT

Adelaide Research Network 3 - 4 June 2005

UNIVERSITY OF ADELAIDE

Convenor: Alison Hunter Memorial Foundation

Dr Michael Barratt MBBS FRCPA

Medical Adviser, Alison Hunter Memorial Foundation

Sydney

Forum review: Current perspectives

The keynote speaker was Professor Kenny De Meirleir, Professor of Medicine at the Free University, Brussels, Belgium. His clinic sees 800 CFS patients every three months, coming from many parts of Europe. He has 50 papers awaiting publication about this condition, many dealing with molecular biology as it impinges on aetiology, treatment and prognosis. This article briefly summarizes some of the large amount of current research into CFS presented at the Adelaide forum. Professor De Meirleir presented an epitome of over 5000 research papers on the topic since 1999. This disease has measurable physical abnormalities, contrasting with the dearth of adequate science in psychiatric claims.

• CFS is not primarily a depressive illness, or some sort of psychological problem.
  
• The abnormalities at the cellular level explain the clinical abnormalities.
  
• The biochemical and cellular chemistry confirm that CFS is a disorder of immuno-vigilance caused by low grade sepsis and chronic, mostly undiagnosed infection.
  
• It is a heterogeneous illness, a true syndrome, with a clustering of many symptoms and signs, and a large number of ?causes?. Especially, it is not a single symptom to be called ?chronic fatigue?.
  
• It may turn out that CFS is caused by many different diseases, just as ?all that wheezes isn?t asthma?.
  
• There is a chronic over-stimulation of an increasingly dysfunctional immune system: more activity, but less effectiveness.
  
• Activation of anti-viral pathways plays a central role, especially low molecular weight Ribonuclease L (RNaseL) and Protein Kinase pathways.
  
• The role of non-viral micro-organisms and even non-biological agents, like insecticides or heavy metal pollution, in activating viral pathways needs to be sorted out.
  
• The reactivation of latent viruses, and other micro-organisms, involves profound interactions between the brain and immune system.
  
• The gut is central to the initiation of CFS. Intestinal dysbiosis allows toxins, viruses, bacteria and heavy metals that must not enter the body to do so.
  
• The blood-brain barrier is defective, allowing molecules that must not enter the brain to do so.
  
• Herpes viruses play a key role in about 20% of cases with CFS.
  
• The Final Common Pathway of all the causes of CFS is Dysautonomia, i.e. autonomic nervous system dysfunction.
  
• CFS is a serious, legitimate illness, devastating to those who have it, with a slow and uncertain recovery for many. The spectrum of disease extends to the wheel chair and the bed bound, and it has a significant mortality, caused both by the often severe effects of the illness and by suicide. The extreme end of the condition is virtually unknown to even the most gifted and caring of the medical profession, who pass the ball to the psychiatrists from where they end up in anorexia or other clinics.
  

[MNsue]

Very interesting. Thanks for posting this.

Rhonda

[Elegiamore]

GREAT article, thanks so much for posting it.

However, Dr. David S. Bell, a pioneer in CFS treatment, one of the pioneers of Charlotte, NC, along with Dr. Cheney and Dr. Lapp, has written an entire book on how CFS IS POTs. He treats his patients with IVs and has plenty of research data to elaborate on this conclusion.

He has a website at www.davidsbell.com where you can download a pdf of his book and sign up for his newsletter, which I highly recommend. Reading his chapters on dysautonomia made me feel like a regular person. Too bad he moved to Lyndonville, NY and only treats locals now.

BTW, Dr. Lapp is still in Charlotte for those of you in NC who are looking for a good doctor for POTs.

Elegiamore

[juliegee]

Very interesting. Dr. Peter Rowe of Johns Hopkins believes that orthostatic intolerance: POTS or NMH or both, comprises the basis for CFS. He gave me a diagram to DX CFS with OI in the center. Radiating out from OI are other overlapping conditions: depression, anxiety, food allergies, inhalant allergies, asthma, infection, movement restriction, Chiari type I or c-spine stenosis, EDS and finally pelvic venous incompetence. I believe he said that if you have several of these other factors going on with your OI, you have CFS.

I find it puzzling that these European doctors, while definately hitting on many important aspects of CFS, never directly mention OI's.

Dr. Rowe and Dr. Bell are definately on the same page.

Julie

[DancingLight]

I am not a 'medical expert' by any means, but my understanding of the CFS and Dysautonomia are different than as stated above...

I have not read Dr. Bell's website yet.

I did read the points of the article posted, which are confusing b/c one point states that CFS may be discovered to be several different illnesses (this is what I believe will happen in the future. I think it is very real, but too often used as a waste-basket diagnosis that misses underlying causes). In another point he states that the Final Common Pathway to CFS is Dysautonomia. Not sure what the article is really trying to say.

What I DO know is that Dr. Peter Rowe at Johns Hopkins, as Julie mentioned above, does connect the two. However, (Julie I hate to contradict you! )...in hi study Dr. Rowe took patients with CFS and gave them the tilt test. He found that a certain percentage had ANS dysfunction while others did not. This was the beginning for him of separating out two types of CFS patients--those with Dysautonomia (positive tilt test) and those without (negative tilt test). He emphasizes the importance of treating patients who have CFS AND ANS Dysfunction with meds for the ANS problems b/c this can often lead to improvements. He was the first doctor to differentiate b/w these two groups of patients.

I wish I could remember the year of the study and/or the percentage of patients that had just CFS vs. those that had BOTH CFS and NMH or POTS.

The diagram that you describe Julie...I think that it is actually showing that CFS can be one potential CONTRIBUTOR of OI for some folks just as depression, anxiety, EDS, allergies, cervical stenosis/chiari, infection (i.e. lyme), etc. OI is in the center with the other items listed as possitble causes/contributers.

I may be totally off my mark b/c I am not as good at staying up on research as I once was. However, I still receive the CFIDS chronicle, etc. And from the latest issue, in which Dr. Rowe was interviewed, and also they listed even Lyme and other infections as possible causes of some cases of CFS, I still beleive that they are TWO SEPARATE illnesses.

If they were not, we would not have DINET and NDRF and the CFIDS Association looking at such different things. The CFIDS Association of America, which just went through a huge deal to change the name to CFS/ME, has some funding with NIH, AND just launched a HUGE ad campaign certainly sees CFS as separate. They do, however, OFTEN address that many people have OI issues that need to be treated.

Sorry this got sooooo long! I just was afraid that we might be sending out some misinformation. However, please correct me if I am totally wrong on this one! Tonight at dinner I was like, okay mom, do you remember that study by Dr. Rowe? This is what he found, right? Because I didn't want to mess up!

I hope this helps!

We have so much to learn about BOTH illnesses and many of us HAVE both! And then some of us like to get things really mixed up and get something like Lyme as an infectious cause of both. UGH!

No wonder we need a documentary!

Later alligators!

Emily

[juliegee]

I agree with you, Emily! This is a complicated and confusing topic. The relationship between OI and CFS has yet to be conclusively established. And, from my understanding, diseases/conditions like Lyme and Gulf War Illness, etc. can often lead to OI's and symptoms very much like CFS.

My understanding of Dr. Rowe's CFS/OI chart differs from your interpretation, Emily. I was trying to figure out if my son met the criteria for CFS when Dr. Rowe pulled out his "handy"chart. He said that anyone with an OI and several (?) of the other contributing factors: depression, anxiety, food allergies, inhalant allergies, asthma, infection, movement restrictions, chiari type I or c-spine stenoisis, EDS or pelvic venous incompetence meet the criteria for CFS. He seemed to indicated that the more contributors that one has (in addition to an OI) the more conclusive the DX for CFS AND the more severe the case.

Keep in mind that my child had an OI, and that may be the reason that Dr. Rowe used THAT chart. I have also read some other information attributed to Dr. Rowe that indicates that NOT everyone with CFS has an OI, which certainly seems to contradict his "handy" (or now confusing:-) chart. I recently read the article that Dr. Rowe and several colleagues published in the mid 90's, which indicates (based on that particular study) that 70% of CFS patients had an abnormal tilt table study and 90% of patients with fibromyalgia (FM) had an abnormal tilt. I understood that Dr. Rowe was one of the first reasearchers to more conclusively link OI's with CFS and FM. Emily, You seem to be interpreting that same study to also say that Dr. Rowe was also able to positively identify several patients with CFS and FM, who DIDN'T have an OI and you are correct. However, I think his emphasis has always been on studying the connection (which clearly isn't always present) between OI's and CFS/FM. We may simply be interpreting the same study differently.

I apologize if I misled anyone with my info. It is VERY confusing and even the experts out there haven't come to any formal consensus. Regardless, I am very grateful that we were lead to Dr. Rowe. He has been able to help my son, and subsequently me, when none of the doctors here locally in northeastern GA were able to help us. I am also very grateful to have found this site with so many other fellow sufferers. I learn so much from you all daily even though I don't post too often. And, (finally) I am grateful to have met you, sweet Emily. You contribute so much to the site and keep us all on our toes! Thank you.

Julie

[DancingLight]

Julie,

Your kind words moved me to tears. I am so grateful to so many people here too and am so grateful you and I have connected (just wish it wasn't because our Sunfish is so sick!).

I am incredibly grateful that my post did not upset you! It does all get very confusing. In reading your post I think we are fairly close to saying some of the same things actually! It just gets so muddled.

You are right on that Dr. Rowe made the original CFS and ANS connection with that study. It gave the ANS docs a LOT more patients all of the sudden!

Also, I get muddled on whether all OI patients have CFS...but I think where we both got mixed up and now are both on the same page is that there are still SOME patients with CFS that DO NOT have OI. Soooo....that is why that article saying ALL patients with CFS have OI seemed a bit off to me.

Later alligator!

Emily

[DancingLight]

P.S. I look at the chart with all of the 'outside' circles as pointing 'in' to OI--so I suppose the chart would be different for a person with CFS and not OI? I've always found every part of that chart clear as to the contributing factors, of which I have more than half (so wonderful ), but the fact that the CFS circle is bigger--does that just mean that it is a HUGE contributor to OI cases OR does it mean what you are thinking--that all OI patients also have CFS? Who the heck knows! I think it's so muddled b/c with OI you have so many of the symptoms of CFS like fatigue, but I don't have the headaches or sore throats and such. Hmmmm....more confused than ever! At least we can get a laugh out of it!

Emily