CFS / ME UPDATE ENLANDER Dec 2010 part 1 chronic fatigue syndrome

mE CFS interview by Jay Spero part 1

Category:

Science & Technology

Tags:

• CFS
• ME
• ENLANDER

[denlander794]

dear Amy

we do not know what the causality (etiology) of ME/CFS . Any insult to the immune system causes a breach that creates the immune system dysfunction. Is XMRV an insult or a comensal that takes advantage of the insult, we do not know.

de

[denlander794]

Dear Kaazoom,

The symptoms you describe should be evaluated by a neurologist,, perhaps with an MRI and EEG. As you said, the symptoms are not those of classic ME/CFS

Derek Enlander MD

New York

[denlander794]

Dear Emootje

ANP  has a complex action on the atrium.It is related to hypervolemia, exercise, caloric restriction, atrial distention, stretch of vessel walls, β-adrenoceptors, increased sodium, Angiotensin-II, and Endothelin. . How does this react in ME/CFS , we are not sure.By increasing atrial blood volume, pumping blood into the heart during diastole by EECP (Vasomedical) we seem to increase cardiac output and relieve " brain fog ".

We have an EECP study in ME/CFS underway at present.

[denlander794]

excellent , I am glad to hear that there are physicians eager to treat ME/CFS in Britain, We measure Cardiac output by ICG rather than measure blood pressure which is performed in the tilt table test. Cardiac output is low or low normal in ME/CFS. I kept my British registration and see patients in the UK and Ireland twice a year usually in London, Dublin and Belfast

[denlander794]

it is a sad reflection that docors do not listen to patients

[FordF1502001]

Thanks for your video. I have had dead ends as far as Doctors listening to me. You can tell by their demeaned they have no clue how bad we suffer. I do have FMS/CFS and severe anxiety. Anxiety is so bad any movement triggers my heart rate to increase. When I stand up my heart rate is up there and my BP drops by 10 points or more. I know what normal is as this onset has been going on for 7 months. I'm missing out on life and missing to spend quality time with my 14 year old. I cannot be up too m

[Amy2838]

Excellent interview. Very informative. I am seeking a diagnosis now, but it's been slow and frustrating. I am 32 and can't remember exactly when I stopped feeling "normal" and started feeling non-human. I do remember feeling normal as a child, but definitely not as a teen. I had Shingles around age 9 and a severe Flu around age 11. When they say "viral onset" does that mean any virus that can trigger the XMRV, or the XMRV virus itself?

[kaazoom]

I should have said I was originally diagnosed with myalgic encephalomyelitis by a neurologist in 2007 because he said my "constellation of symptoms" fit nothing else he was aware of. The local CFS/ME service said it didn't look like CFS/ME and I was sent to The national Neurological Hospital in London, which was not a good experience. I left there with them saying it is psychogenic. They believe M.E. is psychogenic and cured by GET and CBT.

[kaazoom]

@denlander794 I have seen five neurologists. I have had a EEG, 2 lumbar punctures, a MRI of my brain and spine, a EMG , a EMG EGG combined (my movements were too strong so they couldn't get results), a startle study which showed a abnormal audio startle response, and blood tests. The neuropsychologist found I've problems with short term memory, information processing, problems with executive function and problems forming new memories. She said I get there eventually but far too slowly.

[kaazoom]

This means I am left with virtually no medical care. I have been told that my movement disorder is psychogenic, even though A psychiatrist could find no evidence of somatisation or anxiety disorder. I only wish we had doctors

like you, here in the UK, who would treat ME/CFS as a real physiological disease rather than blaming and stigmatising patients.

[kaazoom]

I live in the UK and have been ill for 5 years following a series of minor infections and a flu jab which I had before fully recovering. I have post exertional malaise, muscles that fatigue very easily and cognitive problems which have been confirmed by a neuropsychologist. But I also have numerous other neurological signs including a spastic gait, involuntary movements and parkinson-like symptoms. All of which can vary. I therefore don't fit the UK CFS definition which focuses on tiredness.

[emootje1973]

@denlander794

The EECP study sounds very promising,

Thanks dr Enlander