Has anyone seen the new Harvard ME/CFS website? Looks well done!

[Belbyr]

Maybe I've been in the dark and haven't seen this yet but wanted to pass along.
http://endmecfs.mgh.harvard.edu

Make sure to check out the 'projects' tab. Very interesting stuff they will be testing and amazing to see a little more depth to the ME/CFS & POTS connection.

 

[Diwi9]

The content here actually gives me hope: http://endmecfs.mgh.harvard.edu/mesmerize/about/. Ron Tompkins is a power player and I hope he can bring in research funds and new academic interest.

 

[ljimbo423]

Neuroimmune & Autonomic Imaging

The Harvard ME/CFS Collaboration at Harvard-Affiliated Hospitals

Another focus of the clinical research for this Collaboration involves our hypothesis that microglial cells become activated in critical brain nuclei creating a form of neuroinflammation, which affects normal function of multiple brain nuclei including those in the brainstem, during the development of the ME/CFS disease.

Specifically, microglial activation or neuroinflammation involves a M1 (proinflammatory) phenotype of microglia in brain stem nuclei and this inflammatory phenotype, as demonstrated by its genomic and proteomic characteristics, is causally related to the neurological symptoms associated with many, if not most, of those seen in ME/CFS patients.

There are two other states or phenotypes for microglial cells (macrophages). These are M0 (resting) and M2 (repair) phenotypes, which also have characteristic genomic and proteomic features, and these phenotypes are not inflammatory.

Read more

If you go to the site and click on "Read more" the write up is very detailed.

http://endmecfs.mgh.harvard.edu/neuroimmune/

 

[ebethc]

super weird....no shrinks (sarcasm)

http://endmecfs.mgh.harvard.edu/mesmerize/about/

 

[Belbyr]

super weird....no shrinks (sarcasm)

http://endmecfs.mgh.harvard.edu/mesmerize/about/

Crazy, isn't it?

 

[Rufous McKinney]

super weird....no shrinks (sarcasm)

The Center for Excellence may include psychiatric disciplines....it says this...

"The multiple clinical medical disciplines that are necessary to meet the needs of these patients with chronic, complex diseases include internal medicine, primary care, infectious disease, neurology, surgery, neurosurgery, genetics, pediatrics, rheumatology, cardiology, pulmonology, psychiatry, psychology, and possibly multiple other medical specialties. Together with these clinicians, many other healthcare professionals are also critical to the care of these patients including nurses who are knowledgeable about these complex, chronic diseases, occupational and physical therapists who have experience in this patient population, and social services staff who are familiar with the particular needs for these patient populations."

 

[ljimbo423]

Continued from post #3 in this thread-

Background

There is ample evidence that low grade inflammation is present in ME/CFS patients at all times when the disease is active and this inflammation might be very significant during periods of flares.

This peripheral inflammation can either be spread directly to the central nervous system (CNS) via porous portions of the blood brain barrier or it might be detected by the vagus nerve afferent system and transmitted to the CNS indirectly.

Either way, it is easy to understand the possibility that a CNS form of neuroinflammation is also likely present in ME/CFS in the form of activated microglial cells, which are the macrophages in the CNS.

Patient Studies

Given the frequent involvement of neurotropic pathogens during symptom onset and given the profundity of frequent neurological and "sickness" symptoms including autonomic dysfunction, brain fog,

sensory sensitivity, and pain, a significant focus of both ME/CFS and Post-Treatment Lyme Disease (PTLD) research should involve the brain.

We hypothesize that glial signaling is activated along the neuro-immune axis, and that this state contributes to symptom maintenance.

I think what they mean by "neurotropic pathogens" is EBV and other viral infections that can often trigger ME/CFS.

http://endmecfs.mgh.harvard.edu/neuroimmune/

 

[Learner1]

The Center for Excellence may include psychiatric disciplines....it says this...

"The multiple clinical medical disciplines that are necessary to meet the needs of these patients with chronic, complex diseases include internal medicine, primary care, infectious disease, neurology, surgery, neurosurgery, genetics, pediatrics, rheumatology, cardiology, pulmonology, psychiatry, psychology, and possibly multiple other medical specialties. Together with these clinicians, many other healthcare professionals are also critical to the care of these patients including nurses who are knowledgeable about these complex, chronic diseases, occupational and physical therapists who have experience in this patient population, and social services staff who are familiar with the particular needs for these patient populations."

Unfortunately, Harvard has a very robust department in functional disorders, including a rehab department, where patients learn to overcome their perceived physical problems through psychiatric techniques.

Shocking in this day and age. A friend with neurologic damage was victimized by these folks.

I hope the ME/CFS collaboration stays well away...

 

[RL_sparky]

Unfortunately, Harvard has a very robust department in functional disorders, including a rehab department, where patients learn to overcome their perceived physical problems through psychiatric techniques.

Shocking in this day and age. A friend with neurologic damage was victimized by these folks.

I hope the ME/CFS collaboration stays well away...

Ron Tompkins seems like the real deal so I imagine he will have nothing to do with these people.

 

[Learner1]

He definitely does, and I hope so, too.

 

[Rufous McKinney]

I hope the ME/CFS collaboration stays well away...

Hopefully we can soon see a more rational and balanced view of psychiatric support. Not psychiatric denial.

Somewhere in a thread, somebody described how there psychologist was helping them get all kinds of things aligned to better manage the illness. So we can hope for- support.

 

[Belbyr]

Unfortunately, Harvard has a very robust department in functional disorders, including a rehab department, where patients learn to overcome their perceived physical problems through psychiatric techniques.

Shocking in this day and age. A friend with neurologic damage was victimized by these folks.

I hope the ME/CFS collaboration stays well away...

I think with OMF team, Ron Tompkins, and Dr Systrom involved, amongst other great ones... We don't have to worry about that happening.

 

[Consul]

I saw someone tweet this, looks new. Their theory is that inflammation related muscle recovery doesnt work properly and so causes delayed recovery. Will also test the metabolic trap.

https://endmecfs.mgh.harvard.edu/skeletalmuscle/