Electroconvulsive Therapy(ECT) Success in CFS/ME and FM?

Discussion in 'Fibromyalgia Main Forum' started by mindblower, Sep 4, 2008.

  1. mindblower

    mindblower New Member

    Hi, Everyone.

    I'm new to posting on this board, but not to reading posts here nor to CFS as you can see in my profile. My interest in posting now is as follows.

    Dr Goldstein's treatments based on his model for CFS seem should have at some point lead to electroconvulsive therapy(ECT) as a recommended treatment for CFS and possibly FMS too. But I don't know that he ever recommended it among all that he did suggest trying and it seems somewhat strange as well that the CDC, whom also considers CFS a form of depressive disorder(poor neurotransmission generally speaking), has never recommended it for us to my knowledge either.

    Does anyone know what gives about this, especially with so many people with a CFS or FMS diagnosis having suffered greatly for years or having taken their lives without this treatment option ever being suggested? ECT is considered the most highly effective AD treatment by mainstream medicine's psychiatric community.

    And you can certainly find rational clear minded folks on the web, including youtube uploads, who report significant alleviation of their brain symptoms as a result of it.
    I also find at the cfs-phoenix.com site this interesting article about a study that shows ECT can have significant impact in alleviating FMS pain:

    "...Usui, C., Doi, N., Nashioka, M., Komatsu, H., Yamamoto, R., Ohkubo, T., Ishizuka, T., Shibata, N., Hatta, K., Miyasaki, H., Nishioka, K. and H. Arai. 2006. Electroconvulsive therapy improves severe pain associated with fibromyalgia. Pain 121, 276-280.

    A recent trial involving electroconvulsive therapy (ECT, i.e. electroshock) also suggests that the hyperexcitability seen in FMS is due to lack of anti-nociceptive activity. ECT was found to significantly improve the pain scores in FMS patients with severe pain. Their scores, promisingly, remained low three months after the treatment.

    An examination of regional cerebral blood flows after ECT found that it significantly improved blood flows to the thalamus, a part of the brain involved, among other things, in the interpretation of sensory inputs. Chaudhuri and Behan suggested thalamic inhibition may also cause central fatigue in CFS. It is believed that the ECT activated anti-pain nervous system pathways involving serotonin, norepinephrine or dopamine. Prior studies have found reduced serotonin levels in FMS. The recent Pharmacogenomics studies suggest these same pathways may be involved in CFS. Once again we see evidence suggesting that circulatory problems may play a role in FMS pathophysiology..."

    Something interesting about my case of CFS, which as per my profile you can see has me enduring long term refractory headache as my most debilitating symptom, is a scan of my brain with PET that showed bilateral hypoperfusion of my thalami, the same brain structure(s) this study suggests when hypoperfused is linked to chronic pain, and if Chaudhuri and Behan are correct, chronic fatigue too. Then to go with this, though I won't post it here now, I found at least one abstract on pubmed that reports a case of refractory migraine headache being eliminated as a result of ECT and this in the face of the fact that one common side effect of ECT is a temporary migraine, not to forget the short lived short term memory loss that does go away too according to the American Psychiatric Association(APA).

    Has anyone here with CFS or FMS had ECT and had similar results or experiences like in these examples? Now I do see one person in the archives here posted about an apparently bad ECT experience, but I'm a bit suspicious of this post as it seems off in accurately portraying basic facts of ECT(the number of treatments this person reported is more than double the standard initial recommended schedule and the complaint of bad memory of events the day after a treatment is to be expected, not some kind of unusual potential side effect that possibly should cause alarm).

    So, I'm not interested in irrational representations of ECT if that's what that was. I do want to get the real scoop on it's potential for treating us(good or bad) and possibly repetitive transcranial stimulation(rTMS) too, as long as it has demonstrated some clear positive results with similar symptom relief and is not too "wimpy" a treatment, as is my impression of it from my reading about it to this point.

    I know that my current doc doesn't like the idea of ECT as a treatment and I recall Dr Cheney was against it for CFS, but I never got this was more than mere assertion based on theory as to opposed to explicit examples suggesting caution. Why rationally wouldn't ECT work for us and how does any such response jive with the examples I provided above and the relatively safe-very positive view the APA has of it as a treatment?

    [This Message was Edited on 09/07/2008]
  2. gapsych

    gapsych New Member

    Welcome to the board.

    FM/CFS are not depressive disorders. The reason people take ADs is to raise their seretonin level.

    The rate of mental health disorders among people with FM/CFS is the same as the general population before getting this DD.

    However, when people get FM/CFS, the rate of situational depression goes up.

    There are also some people who have comorbidity and were depressed before. But their depression does not cause FM/CFS.

    You are right about ECT being very affective, however it is usually reserved for people who are depressed and do not get relief with the standard ADs.

    I would make me think that doctor's would hesitate to do ECT for FM/CFS as it is a medical procedure and you have to be put under. It also has the side effect of temporary short term memory loss.

    I would also think it would be cost prohibitive.

    Interesting idea.

  3. mindblower

    mindblower New Member

    Thanks for your welcome and responses.

    ECT is a treatment covered by Medicare Insurance, which many with CFS and FM who can't work have. I hope this helps.

    And I agree with what we mean within this community that CFS and FM are not depression, but to expose common ground my comments intentionally referenced Dr Goldstein's and the psychiatric professional community's use of the term rather than our preference. "Depression" for them has really become very broad in meaning, an efficient word to use for them I suspect that fits just about any condition where serotonin or any neurotransmitter functioning is off in our central nervous systems in some way, for whatever reason, and FM as well as CFS do fit this description.

    This is why ECT may be an appropriate and, perhaps, surprisingly overlooked effective treatment for us, particularly when so many alternative medicine treatments have failed so many of us and when the ADs or other pain meds. don't help more than cause problems, which is often the case. And I sense that just like CFS and FM have a history of being stereotypically disgarded as genuine diagnosis, modern ECT too may be getting the same kind of stereotypical disrespect in contrast to many positive reports about it one can easily find when they look and carefully consider what's being stated.

    ECT certainly does seem to significantly help neurotransmitter functioning and has shown definite pain and other symptom relief in conditions that we wouldn't call depression(migraine, parkinson's, huntington's, dystonia, and now FM too). Then as for my doctor's or Dr Cheney's inclination against its use in CFS, I find these theoretical views oddly suspect now given the concrete examples of safe successful treatment with it.

    These docs do come from a generation of those coming up in the era when ECT was not regulated and there was unsafe administration of it on patients. This may be the sole, and unfortunately now, inappropriate source of their bias.

    Then as to their alternative and admitted largely failed way they and many docs treat CFS in particular, I can certainly see they may be threatened financially if not also egotistically if something so simple as ECT can indeed be born out as an effective superior treatment for this population's large number of refractory cases. I don't know if this will be the case, this is why I posted my questions above for those who've seriously researched it.

    And those actually having gotten ECT, or rTMS too for that matter, would be the best feedback we could get. We may find out side effects observed on day one post treatment do clear up and aren't so bad after all is said and done.


    [This Message was Edited on 09/08/2008]
    [This Message was Edited on 09/08/2008]
  4. gapsych

    gapsych New Member

    While this ECT probably would help some people who are resistent to most ADs, I would think it would not become an accepted medical treatment

    I have seen good results with ECT for depression.

    But I think the bottom line is the insurance companies would hesitate to cover ECT when there are ADs that are shown to be just as effective for most people. It is not cost effective.

    ECT is a medical procedure that involves doctors nurses, a room for the procedure plus a recovery room. People usually need a series of treatments with ECT, which would even make it a more expensive treatment.

    I think it is an interesting theory and would like to learn more about ECT for FM/CFS. It might work for a subset of patients.

    If medicare covers this, I wonder if it is covered for use as a treatment for CFS/ME.

    I wonder if others have had ECT for depression and the effect it had on their DD.

    [This Message was Edited on 09/06/2008]
  5. Waynesrhythm

    Waynesrhythm Member

    Hi MB,

    I found your post to be very interesting and well thought out. I really know very little about ECT except that it is way different than it used to be. Much more benign and less traumatic if I'm correct.

    If I understand you correctly, I agree that addressing brain function issues could be very helpful for many of us. I myself started a microcurrent therapy recently using a device called Alpha Stim 100. Again, I know very little about ECT, but I wonder if microcurrent therapy might be sort of an ECT lite.

    A fairly lengthy post on my own experience with microcurrent therapy can be accessed at the following link:

    <a href="http://www.immunesupport.com/chat/forums/message.cfm?id=1308845&B=FM#1308857">Moreinfoplease - Alpha Stim 100 Perspectives</a>

    Thanks for your post. I'll be curious to hear how your research and inquiry plays out for you.

    Best, Wayne
  6. mindblower

    mindblower New Member

    Yes, I've looked into supposed "ECT Lite" devices such as tDCS and Alpha Stim 100, but they're not remotely close in concept as well as, obviously, the type of medical device involved. But repetitive transcranial magnetic stimulation(rTMS) might at some point earn the right to be considered a sort of "ECT Lite".

    I would like to hear reports from those who have tried rTMS though it's still experimental, not widely available, not covered by insurance, and has not yet been accepted at the level of true ECT. True ECT produces an intended CNS centered convulsion in people, it's key therapeudic distinction, which is what these other devices that, yes, use electricity, don't do whatsoever, not even close.

    They're not designed for this and if they we're, they'd actually be ECT and called ECT! I see them as potentially stimulating a bit of dopamine release at best, others might say short lived placebo effect, which is what you may have experienced.


    [This Message was Edited on 09/06/2008]
  7. mindblower

    mindblower New Member

    "...I think it is an interesting theory and would like to learn more about ECT for FM/CFS. It might work for a subset of patients.

    If medicare covers this, I wonder if it is covered for use as a treatment for CFS/ME..."

    ECT may actually work for ALL of the above when ADs/pain meds., etc, have proven less than effective as has been and is very often the case for CFS/ME especially.

    But no question Medicare covers ECT, which a standard course of treatments without such or similar insurance could run over $8,000 in total. And CFS/ME specifically should, if I haven't missed something, fall under this coverage.

    One would need to go to a psychiatrist of course to have ECT prescribed and psychiatry institutionally diagnoses any CFS/ME medical history and symptoms as depression. This is a circumstance where with ECT under consideration has this oh-so-hated label within our CFS/ME/FM community become a distinct advantage.

    ECT for depression is accepted treatment practice covered by Medicare.


    [This Message was Edited on 09/10/2008]
  8. mindblower

    mindblower New Member

  9. rachelle01

    rachelle01 New Member

    My brother died from ECT 7 years ago at the age of 38.
    He had severe depression and the med's werent helping. This is not something I would take lightly. There are many side effects...as with any medication. This is def not something I would try for FMS/CFS.
  10. Rafiki

    Rafiki New Member

    who had ME for many years and was doing very well. She still battled daily, grueling fatigue which made her demanding career very difficult.

    First she considered and tried SSRIs believing that, perhaps, serotonin played a part in her illness. SSRIs made her very ill and, ultimately, suicidal.

    She consented to a course of 6 unilateral ECT. She never really worked again. She tried to but she couldn't.

    I wouldn't do it.

    Peace out,

    ETA The suicidal ideation she experienced on SSRIs was completely iatrogenic (caused by med.) and resolved on its own once they were stopped. Her ME, however, became much, much worse.

    [This Message was Edited on 09/08/2008]
  11. mindblower

    mindblower New Member

    ECT is a safe and very effective treatment that is likely tragically underutilized for thousands who die each year as a result of NOT getting access to it. The examples of ECT success I provided(including one with FM/CFS) obviously by definition had good outcomes and didn't die from it.

    I can completely empathize with the loss of an adult brother still relatively young in age as I've experienced the same in recent years too. But I have to question your unexplained dramatic assignment of blame here for his death and suggest to you as well to not take this issue lightly.

    And like I stated I want to avoid irrational conversations on the topic as one poster earlier this year on this board seemed to promote. But I'm certainly willing to hear views against if supported with details and facts rather than emotion alone.

    Did your brother do a full course of ECT and did the coroner rule his death a result of ECT explicitly? Did your brother specifically take his own life?(severe depression as well as CFS/ME and FM are known high risk populations for this behavior irregardless of the type of therapy being done or being considered for treatment)

    And what exactly went wrong in his body to produce death?(death through modern ECT doesn't make sense to me unless some irresponsible doc administers it to someone with other serious medical conditions like serious heart disease or previous stroke that normally precludes its use).


    [This Message was Edited on 09/08/2008]
  12. mindblower

    mindblower New Member

    Thanks for posting to this thread, but like how rachelle101 and I(see my post response to hers) suggested to each other to not take ECT treatments for CFS/ME or FM lightly, I would like to ask the same of you.

    Perhaps you didn't mean it to say it this way, but you stated your friend "was doing very well" and then had 6 sessions of ECT! These two ideas don't compute given ECT is for people who are definiteley NOT doing well.

    It comes across as a bit of a fishy story given this, if you see what I'm saying. Also, the connection to your friend not working again and ECT is vague(lots of people with CFS/ME, including myself, worked for a while earlier on in our illness while trying treatments, but our inability to continue work was based on the worsening course of the illness irrespective of any treatment we may have done prior to stopping).


    [This Message was Edited on 09/08/2008]
  13. Rafiki

    Rafiki New Member

    I was mindful of the fact that any story that begins with "I have a friend" is decidedly suspect. Nevertheless, the story is quite true.

    In fact, this person was a member of this board some years ago and posted about this experience here. Her name is Honora and I'd bet there are people here who remember the story.

    She tried SSRIs to rid herself of the persistent fatigue of ME, when many of her other symptoms had resolved, and ECT to treat the results (iatrogenic depression) of the SSRIs. Her mood returned to its normal steady state when the drugs were stopped but cognitively she was in a bad way and unable to return to her career. She very vividly described to me, at the time, the bizarre difficulties she had doing things like recognizing her own house and getting horribly lost and confused on her own street months after ECT. It was thought that ME made her brain more vulnerable to the known side effects of ECT. That's the way she sees it and I see no reason to doubt her.

    So, although she was not treated with ECT for ME, in her estimation, ECT made her situation very much worse in a precipitous fashion.

    I'm not sure I'm being very clear but I've done the best I can. I'm in a deep and thick fog just now.

    I'm sorry that you're not hearing more encouraging stories. I share your frustration and do not dismiss anything out of hand.

    I wish it worked.

    Peace to you,


    Back in the day when she went through all of this it was not known that SSRIs caused depression in some. It was assumed that the depression was worsening despite treatment, not that it was caused by treatment, and that ECT was now necessary.

    I react to SSRIs just as Honora does. I think many of us do. Messing with our brains via drugs and/or ECT seems pretty dicey to me.

    I'm struggling to make this more clear but fear I am not.
    I'd better give up now.

    [This Message was Edited on 09/08/2008]
  14. Waynesrhythm

    Waynesrhythm Member

    Hi again MB,

    I was wondering what else you may have considered to affect brain function in a way that might improve our CFS/FM symptoms. I've tried piracetam in the past with some limited success. I've long thought hyperbaric oxygen therapy (HBOT) could be very helpful for me, possibly for many others on this board as well.

    I also know some people have had some success with Xyrem. I just ran into a Xyrem post last night entitled <a href="http://www.immunesupport.com/chat/forums/message.cfm?id=981600&B=FM#983202">I've recovered from CFS</a>. I would consider Xyrem myself, but at this point it sounds like it would be very difficult to find a doctor to prescribe it. Plus I would want to explore some more natural avenues before going that route.

    Which leads me back to where I am currently with my microcurrent therapy. Besides being very helpful, it also feels remarkably benign. In addition, I'm doing fish oils (EFAs) plus amino acids for neurotransmittor assistance. I'm also finding MMS to be helpful for some of my cognitive/neurological symptoms.

    Regards, Wayne
    [This Message was Edited on 09/08/2008]
  15. ellikers

    ellikers New Member

    My concerns with ECT (which I've had ever since I learned about it in college) is that it doesn't work WITH a person's memories or learned behaviors ... it literally shocks people's nervous systems to try and jump start it out of problems.

    However, in the case with depression, people who undergo the treatment often suffer memory loss (this is EXTREMELY common side effect) which basically burns out people's abilities to remember what got them into the depressive state to begin with. Or what it feels like to get through such a state and find resources and get help and recover.

    Unlike longer term medication, lifestyle changes, diet changes, nutritional/supplements, counseling, the person is not necessarily an "active" participant in getting better ... for example, I find it highly important that I remember what it was like in my clinical depressive states earlier in life because I also learned (with positive medical and therapy support) how to get OUT of them. Without that knowledge I could easily have gone down the same physiological and psychological patterns and gotten in the same situation all over again. Someone who undergoes ECT doesn't benefit from that process because they literally lack the memories and cognitive involvement.

    I'm not saying that people who have CFIDS or FM contribute to their illness or create their problems but we can actively help our bodies relax and stabilize and unlearn any unhealthy patterns that we do have that increase our ability to get well. For example, I had to learn how to live my life totally differently and take better care of myself and TUNE IN to my body to heal, and I find that valuable. ECT would not provide this benefit.

    Most importantly in my mind, ECT has TONS of serious side effects, many that are far more life threatening and permanent than most meds. And unlike most medications, it can't be undone- if you have brain damage, you have brain damage, there is no "stopping" the treatment, such as going off a medication.
  16. mindblower

    mindblower New Member

    Rafiki: Got it about your brain likely not helping you get things clear at the moment you posted to this thread last and I'm not discouraged about ECT given what you've said so far, which isn't so clear(no disparagement intended).

    It would probably be more clear and feel more credible to hear directly from your friend, particularly the issue of "doing very well" just prior to getting ECT as you stated, which doesn't make sense. Also, the memory stuff around the time of therapy is to be expected and normally clears up eventually by several accounts I've seen or read about.

    Wayne: Check my profile for other things I've tried, it's quite a lot and includes everything you suggest, excepting Xyrem, which were total failures. They had zero benefit in me as well as I've gathered in most people who've been around a while enough to experiment with so many things.

    Unfortunately, all the so called natural and hoped for elegant solutions for entrenched CFS/ME cases have predominantly proven false leads, IMO. They at best help some peripheral issues, just not the heart and guts of this condition, what really needs to happen for many like myself.

    ellikers: Congradulations on your successes. I don't happen to have the same condition you have is obvious to me if indeed what you say has worked for you did to the extent that you say, though the diagnostic label we both received may be the same.

    None of your suggestions are appropriate or valid for treating the CFS/ME condition I have. It may be hard to hear or understand for you given some of the assumptions you make, but I like so many don't have a condition and symptoms you can better think, better behave, better environment, better diet, better relax, better emotionally release, better accept, better heal the past, or better lifestyle in anyway yourself out of.

    These are false and often "field tested" failed treatments for many of us. And unfortunately the same applies to much of the medication we've tried over years, which fact now brings forth the not so elegant sounding yet shown to be safe and potentially effective option of ECT.

    I don't agree with your very dramatic and mostly false characterization of it. ECT doesn't cause a lot of side effects nor death, but I do appreciate your concern as it does cause temporary short term memory impairment, which should be carefully considered against the potential good results one might derive from it.

    And the supposed brain damage you say it causes has no basis in science. In fact, more recent articles on what ECT does do in the brain suggests it helps grow and heal neural tissue to better functioning.

    MB[This Message was Edited on 09/10/2008]
  17. Rafiki

    Rafiki New Member

    I just tried one last time to explain how she could have been doing well in terms of her ME symptoms (she was about 10 years in at that point) except for the lingering fatigue and yet get into such a terrible state with the iatrogenic depression that she would consider ECT for the iatrogenic depression but I gave up and erased it.

    She would be happy to communicate with you directly except she was banned from the board for protesting the banning of another member and cannot log on.

    I can imagine how eager you are to find a solution to your painful situation. I can see the logic behind your interest in ECT. I simply urge caution. It might not be wise to be one of the first to explore this option.

    Good luck to you,

    ETA: I just looked at your post again and feel I should tell you that, along with a return of or worsening of her ME symptoms, she has significant memory loss not only for the weeks during which she had the ECT but cutting a wide swathe through the years prior to the ECT which are shot through with big empty holes where, sometimes significant, memories should be.

    Yeah, I know, not supposed to happen. Maybe doesn't happen to people who don't have ME. Maybe only happened to her. Hard to know. Risky business.

    [This Message was Edited on 09/10/2008]
  18. mindblower

    mindblower New Member

    Rafiki: I get your concern, but it's still not clear about your friend and that there's any connection with ECT and her symptoms you report. Nevertheless, it's clear you're afraid of ECT and worry it may not be appropriate for those of us with an CFS/ME diagnosis.

    And I certainly agree with proceeding with caution for anyone considering this treatment. But I don't see myself as necessarily among the first with CFS/ME who might go for ECT as a potentially effective remedy.

    You may not be aware of this, but CFS/ME and atypical depression(as opposed to classic major depression) are one in the same to doctors and psychiatrists in many countries.
    Dr Goldstein called CFS/ME a neurosomatic disorder, but also seem to agree with his colleagues that "atypical depression" is what we have, though he understood the term "depression" misleads to an errant psychogenic or psychosocial interpretation of this condition.

    Eitherway, ECT is documented as successfully treating atypical depression and it therefore may be the case that many thousands and perhaps tens of thousands of people with CFS/ME have been successfully treated with it. It could be they and their doctors never latched on to the terms of CFS/ME.

    CFS/ME is almost completely unknown and unused terminology by the typical doctor and layman anyway, which may explain a lot.

    kjm(Kina): I haven't made up my mind about getting ECT, but I am in the consideration process of doing so and the prospects are looking good given so few stories with objective data against, in contrast to the larger body of positive data in support. I see the UK based commentary on ECT you provide and I am suspicious regarding both its accuracy and its credibility.

    The UK medical establishment(mainstream or alternative) is not a credible source of CFS/ME research and treatment recommendations from my experience. With many variations on the theme, they predominantly adhere to a psychogenic/CBT treatment model of CFS/ME, which I know to be a false and often fraudulent conception of this condition, particularly when such therapies and their promoters suggest cure(not to suggest you're doing this, as I wouldn't know).

    These promoters feel themselves in direct competition with treatments like ECT and often pharmaceuticals too. Anything they say warrants suspicion if not something to completely ignore.

    Unbiased and accurate information can be obtained elsewhere.


  19. zoster

    zoster New Member

    Sorry but I don't get the link from treating depression to treating ME/CFS. They are two different illnesses.

    What is the scientific basis of the idea behind thinking about ECT a treatment used for depression for use in CFS/ME. Seems that it was just plucked out of the air.

    Have to say electrocuting the brain for anything sounds totally crazy!

    I knew someone who had ECT years ago - are they even still doing it!? They ended up with severe memory loss and in a vegetative state for quite some time. Sounds like a torture method!
  20. acer2000

    acer2000 New Member

    The problem with stuff like this (and EEG biofeedback - which is different but tries to effect the EEG as well) is that unlike ADs and other psychoactive drugs, there is no going back if you don't like the result. Take a drug and you don't like the side effects, mood shifts, memory loss, etc.. you can generally stop taking it or change the dose. Do ECT and this happens? Your stuck. And if the effects are severe, you are screwed. Many people might say "oh well I hate ADs and I can't tolerate drugs, so ECT or EEG BF is better beacuse drugs are bad", but they fail to consider the aformentioned possibility.

    The other problem is, with CFS and FMS etc.., there is a real organic cause for the problem. Just because they haven't found the cause in most cases, doesn't mean it isn't it doesn't exist. The premise of things like ECT is they can "state shift" your EEG to a "better" place. But what if your EEG (and thus your brain function) is in the bad place because of an infection or toxin? What happens then? How do the two interact? Sounds like a big unknown to me...[This Message was Edited on 09/10/2008]
    [This Message was Edited on 09/10/2008]