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"Chronic Fatigue Syndrome Gets a New Name"


westcoast

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2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

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In a few years it is likely that current research will discover, or confirm in some cases, major pathophysiology and maybe even the cause. Then the name will most likely change anyway. It might, for example, become Diffuse Limbic Encephalopathy. So we spend all that energy on advocacy and lose our new name even if we are successful, and the likelihood is that we will fail.


Getting our researchers moving is a better target. Funding and political support for them is critical.


Getting good definitions used in research is important. The name is secondary to this.


Discrediting bad research, and claims made on that research, is important. Please be aware that since 1970 ME has been often considered synonymous with psychogenic. What we call the Wessely School has been pushing this since the 80s. If we get a name, any name, they will then work to rebrand it as psychogenic … unless we have diagnostic tests, mechanisms etc from good science to fight them.


The science is important, and hence the definitions. The politics is important, reason needs to prevail over rhetoric. The name would be nice, but it is also a wasted effort.


If a name change comes it will most likely be from our scientists. If the biomedical researchers can advance enough, it will be from them. Otherwise we are facing either CFS or something just as bad or even worse from the psychobabble brigade.


I really dislike CFS as a term. Its not just misleading, its seriously flawed in so many ways. Yet the term "CFS" is the wrong target for advocacy.


Don't forget the logic of it. CFS and ME/CFS and CFS/ME are based on the idea that the disease subgroups are synonymous. With CFS in particular its highly problematic. I think it was about 1998 that Byron Hyde pointed out that many with ME don't even have chronic fatigue, yet the term CFS, which requires chronic fatigue to diagnose, is often considered synonymous with ME, even here in Australia.


 


copied from here


http://phoenixrising.me/archives/26201


 


ps if you have this and are interested in a thread about it we have one here


http://survivingantidepressants.org/index.php?/topic/6329-chronic-fatigue-prozac/


 


and likely others


peace


WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

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  • 10 months later...

3. All test requests from non-patients are currently suspended.


I believe this is due to the recent book we published about CFS. This book is available to buy from my online shop Sales at Dr Myhill: CFS - it's mitochondria, not hypochondria and many answers lie within!


 


Gee I have been saying that for years I can't help but wonder what is in that book... 


 


I found it here


http://www.drmyhill.co.uk/wiki/Ordering_Tests


WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

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http://www.salesatdrmyhill.co.uk/quotchronic-fatigue-syndrome---its-mitochondria-not-hypochondriaquot---a-book-by-dr-myhill-10-c.asp

 

From the list I chose to look at this link

 

Fatigue is the symptom we experience when energy demand exceeds energy delivery so attention to both sides of the equation is needed.

In thinking about energy delivery a useful analogy is to think of the body as a car:
Mitochondria are the miniscule engines that burn fuel (acetate groups from fat and sugar) in the presence of oxygen to provide energy for every living cell in the body. We have published three studies showing that mitochondria running slowly is the central cause of fatigue in CFS/ME. Mitochondria go slow for two common reasons - either they are deficient in micronutrients so the enzymes do not work well, or they are blocked by toxins. The third paper we published showed that the nutritional deficiencies are corrected reliably well with all or a combination of micronutrient supplements and this is paralleled by clinical and biochemical improvement.

See CFS - the central cause: mitochondrial failure

A typical regime, if the gut works perfectly, would include magnesium 300mgs by mouth (but ideally magnesium by injection), co enzyme Q 10 200mgs, acetyl L carnitine 2 grams, D-ribose 15 gms, niacinamide 1500 mgs and vitamin B12 1mg by mouth (ideally by injection). These should be taken in addition to the Basic Package and, where tests indicate, extra anti-oxidants.

If gut function is impaired by allergy and/or fermenting gut then injections become more important (only available on prescription). If injections are not available then transdermal nutrients may be helpful.

I am not sure what the cause of my hypersensitivities are but I doubt I could take all these supplements at the moment my gut is not working at all... so who knows. 

Maybe it will be of use to some others here.  I would still like to read the book or hear from any others here who have read it. 

peace all

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

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