Recovery…..and Reaction

July 26, 2009

Posted by Cort Johnson

PLEASE REPOST PUBLICLY”

In a recent post, (marked “Please do not repost publicly”)  Jodi Bassett noted her ‘outrage’ at Mike’s story of his recovery and declared herself ‘absolutely disgusted’ by Mike’s attempt to spread it. After only the most superficial acquaintance with the treatment procedures she declared it ‘harmful’

We were rather astonished. We’d offered the story because we thought it might offer some hope. What could have made this maven of medical  correctness so angry? Apparently the suggestion that Mike had myalgic encephalomyelitis tipped her over the  edge. Although we referred to Mike’s condition as ME/CFS throughout the paper Mike’s belief that he had myalgic encephalomyelitis was too much and a rather incoherent e-mail (see below) resulted.

An ME Patient: Mike had an acute onset from which he never fully recovered. Years later following a stressful situation and several treatments he responded very badly to very rapidly fell apart. While this is not your typical ‘got the flu one day totally collapse the next’ scenario it is not uncommon either. I know of one very virulent ME advocate who experienced a moderate onset followed years later by a severe crash that left her disabled. Dr. Chia has publicly noted on several occasions that he believes that the infectious trigger for this illness often occurs long predates the severe phase of the illness begins.

Test Results. The question of onset is relatively trivial, however with few practitioners basing their treatment procedure or diagnosis or it. It was the test results that compelled Mike to refer to his disease as myalgic encephalomyelitis. High viral titers of mycoplasma, HHV-6, HHV-7 and EBV as well as remarkably high RNase L and elastase levels put Mike squarely into the Incline Village subset that the Whittemore-Peterson Institute is focusing on. Incline Village, of course, was the seminal outbreak in the Sierra community in the 1980s’s that put ME/CFS on the map – and that so many ME advocates have gladly claimed as their own.

Incline Village Subset. Dr. Peterson believes that this viral-ridden subset makes up approximately 20% of the ME/CFS population and has a unique neuro-immune disease. This subset does not respond to most of the remedies that other patients (CBT, hormones, over-the counter supplements) try. In order words is THE viral subset in ME/CFS – it’s not the CBT set, or Jodi Bassett’s psychological CFS subset, this is the viral subset in ME/CFS. This very likely, of course, makes it the myalgic encephalomyelitis subset as well.

Intriguingly Mike has been mostly cured by a doctor who believes that a coxsackie virus (enterovirus) is at the heart of this disorder – a common belief amongst some ME experts. Far from harming myalgic encelphalomyelitis patients Mike’s story could conceivably- and the jury, of course, is still out on this question – be illuminating a treatment pathway that is particularly effective with just this group.

But according to Jodi Bassett Mike’s symptom presentation plus oddly enough, his conception of his own disease made it clear to her that Mike was no ME patient. That’s right – in Jodi Bassett’s world what you think your disease is -actually plays a role in what kind of disease you have. In a strange and garbled statement she said

“I have never been of the opinion that the illness this person suffered with was M.E. The onset didn’t fit at all, nor the symptoms or pattern of
symptoms/relapses. There was also an inability to understand the basic facts
of M.E. as neurological and infectious etc., and that M.E. and ‘CFS’ were
not the same, and there was a lot of support for various very problematic
(very much non-M.E. and anti-M.E.)
‘CFS’ groups and individuals (and
‘theories’) and so on. Nothing fitted M.E. Even ‘blind freddie’ could see
that this was not a M.E. patient.

Since Mike didn’t properly understand what M.E. was he probably didn’t have it. His tendency to communicate with and support CFS patients suggested that he was one of them. Mike really crossed the line when he became well using a treatment that did not fit her conception of this disease and then had the audacity to tell people about it. ‘Absolutely appalled’ by the taint that he might have left in her M.E. only website she quickly deleted every mention of him from it.

Reserving Judgment - Meanwhile Mike was at work (with me) trying to figure out a way to test the efficacy of this treatment with other patients. His doctor, with an already busy schedule, agreed to accept several patients that we could follow and agreed with our efforts to monitor them rigorously outside of his practice. We also worked to engage prominent members of the ME/CFS community in our efforts. We made it clear that only a few patients at a time could be seen and we agreed to share the results as they came available. Despite Mike’s success and his obvious enthusiasm we were careful to reserve judgment on the effectiveness of this treatment until we more hard information was available.

But Jodi Bassett felt no need to reserve judgment. Before our ‘treatment trial’ began she pronounced that the treatment not only would not work but was actually ‘harmful’. Bitterly she stated was ‘absolutely appalled’ by Mike’s decision to provide his story to others.

People wonder why anyone would become a politician given the inability to avoid being demonized by some part of the political spectrum but the same problem clearly applies, unfortunately, to the ME/CFS world. One wonders why anyone would be willing to share their success given the reception they are likely to receive. Unless they have the right kind of story they’ll be dealt with by abuse, hate e-mail and an attempt to squash their story.

Ultimately this is dangerous for all of us. People with this disorder have been helped by many different therapies making it difficult to believe that any one treatment will work for everybody. Given the hostile environment it’s possible that when your particular cure comes around you may never hear about it. Why after all would someone risk the comfort of their newly regained health to the buzz-saw of medical correctness that Jodi Bassett and others have erected?

Jodi Bassett has once again displayed the kind of over-reaction that permeates certain parts of the ME/CFS community. Responses like hers tear people from participating in the open discourse that people with this disorder need so badly. They do not serve any of our interests.

So I must ask you who is appalling here? Who is outrageous? Mike Dessin – who wanted to convey news of his recovery and perhaps provide hope for others? Or Jodi Bassett who based on limited evidence and bizarre reasoning quickly attempted to squash that hope?

Jodi Bassetts “Please Do Not Repost Letter’ Is below

From Jodi Bassett,

Hello everyone,

Over the last week or two I’ve read many different responses from members of
the M.E. community to the latest ‘ME/CFS’ miracle ‘cure’ story. Responses
range from sadness and frustration, anger and outrage, and real worry for
the severe harm such material may very well cause M.E. patients (directly or
indirectly). I share all of these responses. I’m absolutely apppalled by
this.

http://phoenixrising.me/Story/MECFSRecovery.aspx

http://cfsknowledgecenter.ning.com/profile/MichaelDessin

I’m writing to you about this case due to the facts that this person had, in
the recent past, a minor link with the Hummingbirds’ Guide website.

(This person was knowledgeable about the various system of detoxification in
the body, and so a comment on this topic by this person was quoted on the
page about antioxidants and detoxification. This person also asked me to
please place a link up to their site to help them improve their desperate
financial situation, which I did as I believed (regardless of the actual
diagnosis) the situation was truly very desperate.)

While I did include this link and this quote as described above, I have
never been of the opinion that the illness this person suffered with was
M.E. The onset didn’t fit at all, nor the symptoms or pattern of
symptoms/relapses. There was also an inability to understand the basic facts
of M.E. as neurological and infectious etc., and that M.E. and ‘CFS’ were
not the same, and there was a lot of support for various very problematic
(very much non-M.E. and anti-M.E.) ‘CFS’ groups and individuals (and
‘theories’) and so on. Nothing fitted M.E. Even ‘blind freddie’ could see
that this was not a M.E. patient.

At the time I did not feel it my place to comment publicly in any way on the
correct diagnosis of a very ill and seemingly vulnerable private individual.
However, a few months ago when I first got wind of this new development (see
the links above), I deleted all mention of and links to anything to do with
this person from the site, in absolute disgust.

I have chosen not to go into much detail here, but if you require more
information, please email me.

Clearly the webpages and websites linked to above are not recommended by
HGME in any way. The HGME also has no link whatsoever with this individual
and does not in any way support any part of this unhelpful ‘ME/CFS’ case
study.

Wishing all of you better health, and less inappropriate and harmful
‘miracle cure’ stories!

Best wishes everyone,
Jodi Bassett

34 comments

{ 34 comments… read them below or add one }

Orpaix July 26, 2009 at 11:56 am

Reading Jodi Besset’s attack made me very sad. To try to follow her argumentation better, and to find the reasons for her to write as she writes, I shecked in on her homepage. After having read what she writes about ME I can not but draw the conclusion that for some reason it is so important for her that her own definition of ME should be the only one in use that she is ready to proclaim that she erases every link to the person not following her orthodoxy. It is wonderful to read about someone becoming this healthy, and it amazes me that anyone could not join in the rejoicing, even if the cured one should have called his illness XTR instead of ME. The illness definitions are necessary in order to have a base to do research from, and with a stricter, unchanged, internationally and interdisciplinarian use of CFS, with subgroupes, research would certainly have advanced much more.

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Revday July 27, 2009 at 1:34 pm

Ok, I read Ms. Bassets definition of M.E. I didn’t find any contradictions in her definition and the case history provided by “Mike”. His story is also very much like a woman named Sophie( I think that is her name) in England, who was eventually killed by nervous symptom overload that occurred during a forced incarceration to a mental hospital. Her autopsy reported damage to the ganglia. The health authorities there thought they knew what was right for her. And they killed her.

I too am saddened when there is a reaction to outside of the box information about symptoms and aid. I personally have tried so many things that I am very hesitant to hear the latest “cure”. It literally hurts and scares me to hear it. Hope is both a friend and enemy of mine.

However, to shut out information is pretty much what the Medical community has done to those who suffer from CFS/ME. It behooves all of us to stay open and see what will happen next. I personally am not going to give up before the miracle happens. However it comes.

I was moved to write this because I have been progressively getting sicker. I am now disabled and mostly housebound. I would ask those who have information about help to share it gladly. And those who are upset about what they share to let me decide how I want to deal with the information. God knows I am old enough to decide for myself. So please, don’t do it for me. And I am committed to letting others decide how they will proceed as well.

And Jodie, if you read this, You have so much good work on your blog. I can’t imagine how much time and effort it takes for you. I’m impressed. So thank you for all of that. I hope you can and will continue your important work.

And I want to ask you not to become a post burner. It’s so much like burning books. And I think burning books needs to be a crime. Just like burning people is now. One form of censorship down another one to go!
If you don’t want something on your blog that’s your right. But please don’t help me and others by deciding what we need to read, see, or do with our lives (such as they are) and our ravaged bodies. That is not help, and if you think about it long enough you may recognize that it is an attempt to control others. And control our own fears. And as such it is spiritually and psychologically problematic for all involved. Fear cannot be our raison d’etre.

In the mean time, Blessings and Peace for us all.

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starshaped July 27, 2009 at 11:56 pm

People with this disorder have been helped by many different therapies making it difficult to believe that any one treatment will work for everybody.

That’s the whole point. We *don’t* all have the same illness, not if you’re going by “ME/CFS” definitions which are deliberately vague in order to include people with psychologically-based fatigue. ME is a specific illness, that has nothing to do with “CFS” or “chronic fatigue”. The ME/CFS patient group is a very disparate group that has been lumped together and fed the spiel that we are all suffering from the same illness. We’re not. That’s why pimping *anything* as a cure is so harmful, especially something that “traditional western minded doctor’s [sic] probably wouldn’t touch with a ten foot pole”. Whatever this “treatment” is, I’m assuming it hasn’t been rigorously tested, trialled or peer-reviewed, in which case promoting it as a “cure” is downright irresponsible.

Please bear in mind that there are lots of people diagnosed with ME or CFS who are very vulnerable. Promoting your “cure” directly to the patient community and waving it around like a rag to a bull is going to create false hope. If you had ME and you are now better, that’s wonderful for you, but it’s doctors and research institutions you should be promoting yourself to. Please do it properly, otherwise you’re running the risk of making things worse for a lot of people.

Jodi is a total inspiration when it comes to ME. She works incredibly hard on advocacy despite her very poor health, and although I don’t know her personally I do know that “cure stories” like these frustrate her because it’s just adding to all the confusion that patients have to wade through online in order to find some properly useful information about ME – something which she has devoted more time and effort to than even most healthy people have. I mean, you’re not even being upfront with us about what this miracle cure is. You can’t blame Jodi for being angry and sceptical.

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cort July 28, 2009 at 11:31 am

If you want to look for vagueness you might as well start checking out the different definitions of myalgic encephalomyelitis – which run a close second to CFS – for vagueness.

If you’d bothered to read the paper with a little care rather than simply reacting to it you would have noted our attempts not to pass judgment on this treatment approach (i.e. market it as ‘the cure’.), our attempts to point out our Mike may be different from other patients and our goal of assessing other patients as they go through the treatment. Hopefully these would have convinced you that we’re not touting this as ‘the cure’ for ME/CFS. We’re presenting it as a possibility, nothing more.

With regards to ‘rigorous testing,’ or peer reviewing I would ask you how many of the things you’ve tried for ME/CFS have been rigorously tested or peer reviewed in medical journals. I promise you the number would be very small. In fact if the ME/CFS community was to wait for judgment on efficacy of treatments for this disease from the research community they would be exploring very few treatment avenues (e.g. CBT) indeed.

Let’s not even drag in the fact that population is so heterogeneous that even something that doesn’t appear to work in a treatment trial will often work for some patients.

Think of it this way – at some point someone going to discover a cure (or more cures) for this disease. If they are going to follow your course they are going to have to get someone interested in your great idea (1-2 years (hopefully); it’ll take about one year to produce a grant proposal, one year to apply for it and get funded, 2 or three years to do the study, maybe another year to publish it. We’re about six to seven years in and you’ve just published ONE STUDY. That’s not nearly enough – to get consensus you need more – the process starts again – maybe after 10 years you have consensus.

It’s ludicrous to demand that potential treatments go through the peer review process and quite frankly, I only see this argument applied by ME/CFS patients who don’t like a particular treatment! I don’t think most people want to give the research geeks 10 years or so to decide whether X treatment works or not. Your argument is what causes people to get such a small palette of treatment options when you go to a traditional doctor; they won’t give you anything unless its been tested first.

Somehow I doubt that you’re any different; if something works on someone you want to know about it – now.

If Jodi was simply being skeptical I assure you there would have been no blog.

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Sarah July 28, 2009 at 12:19 am

I am in the camp that suspects Mike Dessin’s story of recovery is unlikely to be entirely as it purports. Why the scepticism? I think in part it is due to the ‘in your face’ presentation of his story.
Question 1: Is Mike’s the first successful treatment of ME that this doctor has achieved?
Question 2: Is there evidence of other patient success stories?
Many people who suffer from a debilitating illness bear enormous goodwill and empathy for fellow-sufferers. I will be very surprised if other patients who have been helped by this Dr are not willing to provide their story to Cort, to further his research about this Dr’s treatment (they would not need to be publicly identified). I gather the Dr could contact some prior successful treatment ‘cases’ and ask if they would be prepared to talk to Cort.
Perhaps a lesson to be learned from the emotive and polarised reaction to this story is that it is better to go about this style of endeavour in a considered and quiet way. Gather the facts, prepare the evidence, present a complete report.

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cort July 28, 2009 at 11:18 am

Mike reports that his Doctor has been successful with other ME/CFS patients; how successful we won’t know until we do a review of his past cases or until we start following new patients (as we’re now doing).

Your point is well taken. The most effective presentation relies on facts and evidence. On this is a a very personal report of an enormous event in a person’s life; given that it wasn’t surprising to find emotions and even drama kick in. We could have waited for several months and followed the patients we knew through the process but Mike came very close to dying and he strongly felt the need to give some people who were just holding on some hope.

But I don’t think that Jodi Bassett’s polarising reaction to this story grew out of it’s rather dramatic telling. The kind of us/them response that she posed in her response permeates her work. I believe we would have received the same reaction if we had presented this recovery in a dry clinical manner.

You might be relieved to know that the ‘drama’ is over. In fact it ended the conclusion of Mike’s personal story. Once the drama of the story was over we’re doing precisely what you recommended; gathering the facts, preparing the evidence and – once we do so – reporting.

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starshaped July 29, 2009 at 4:50 pm

From Mike’s recovery story:

Doc comes over and he looks at me and says “You’re CURED!! You’re gonna keep on gaining weight and your brain is retraining itself. You’re just gonna keep on improving. It will be like a train that keeps chugging along the path of wellness until you’re FULLY HEALED!!”

I’m sorry, but if that’s you not “touting a cure” I don’t know what is.

I’m actually shocked that you have such a disparaging attitude towards the peer-review process. The whole reason processes like that exist is to protect patients from potentially harmful or damaging treatments, especially if drug therapies are involved. You’re right that there is currently very little in the way of treatment for ME, but pretty much the entire reason for that is because ME patients have been hectored and harrassed by the psychiatric community, lumped in with this new illness “CFS” and over the last 20 years, med schools have taught their students various things about a “mystery illness” called “ME/CFS” and successfully convinced newly qualifying doctors that this is a mental illness about which little is known. ME is no mystery; it has been recorded in the medical literature over 50 years. We might have got somewhere with treating it by now if the CFS debacle hadn’t happened.

I don’t think most people want to give the research geeks 10 years or so to decide whether X treatment works or not.

If it makes the difference between me being given a treatment in which the practitioner has been properly trained and knows exactly what they are doing, and knowing that the treatment is likely to benefit me, or going into something which was an unknown quantity and possibly presented a permanent risk to my health, I’d wait. If you didn’t want to wait you could always volunteer to take part in clinical trials. Frankly it’s all academic anyway, because whoever is offering this miracle treatment is keeping very quiet about what it involves, and to be honest I don’t trust anyone who isn’t willing to give full disclosure about their methods and results.

Have you approached any of the ME charities about this “treatment”? Because I’d be interested to know how their medical representatives reacted to this story.

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Cort July 29, 2009 at 5:52 pm

Touting a cure is stating that this will cure everyone. Not touting a cure is saying that we’re withholding judgment until we have more evidence. Read a little further and you’ll see that’s what we’re doing.

How can you say ME is not a mystery? There are like two studies that have been done on it in the last 30 years. Isn’t that the problem – that you’re getting any research done on it? If you’re not getting any research done on it how can it help but be a mystery? No one knows what causes it (there are ideas, I know) and there’s little idea how to treat it – so unfortunately it is drenched in mystery.

By the way all those records the ME community is so fond of touting consist of a few doctors reports (usually one or two pages of notes) scattered throughout 60 years of the medical literature. I don’t know how ME patients got tricked into thinking that’s a solid foundation (probably through repetition) but it’s not a solid foundation! In the scientific world its a very weak foundation; that’s part of the problem!

Listen closely to this one! If CFS hadn’t come on the scene you probably never would have even heard of ME. Why? Because almost nobody heard of it before CFS made the news. It was essentially a dead topic which was frequented by a very few niche doctors. CFS – as bad as it may be – dragged ME back into the limelight because CFS got some news. Once CFS got some airplay people started thinking about ME again – not the other around. You’ve got it backwards! As weird at it sounds instead of destroying it CFS dragged ME back into the spotlight. Nobodies going to like that because the received wisdom is that CFS doomed ME -but no one was working on ME before CFS appeared; there was nothing for CFS to doom. All you need to do to verify that is to go back to the 1960′s, 70′s and 80′s and look for studies on ME; there are virtually none.

C’mon now – are you really worried about homeopathy and neural therapy? and acupuncture? and prolotherapy? I understand worrying about the side effects of some new drug but these therapies???

OK, the treatment involves a therapy called Neural Therapy – you can find it on the internet. Instead of anesthetics the doctor uses homeopathic formulas. He also uses prolotherapy, etc. I don’t know the precise formula’s – sorry. This was all in the story.

We’ve approached quite a few prominent organizations (they have medical representatives?) and individuals and the response has been very mixed; from complete disinterest on many to real interest from some – just about would you expect, I guess, from an unusual story like this.

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Heidi July 30, 2009 at 10:42 am

Jodi Bassett’s reasoning is illogical. To begin with, she has an emotional attachment to “viruses.”

Using her own site, her “tests” page list tests that are nonspecific and are not necessarily related to a viral cause. Brain damage and cognitive damage are caused by a variety of toxins; immune abnormalities are not necessarily caused by viruses, etc. It is interesting that she does not list viral titers, which Michael actually had. This “tests” page is good, but basically applies to people with the “postexertional malaise” syndrome and/or MCS. No need to restrict to “ME” nor even “CFS” nor viral causes.

http://www.hfme.org/testingforme.htm

Her “treatments” page is entirely about how not to kill someone who has postexertional malaise:

http://www.hfme.org/treatingme.htm

Previously I found a page of hers listing some supplements, but I can’t find the page again. These were nonspecific treatments, not necessarily related to either ME/CFS nor viral causes.

The original (old) ME definitions that I have seen have revolved around a version of postexertional malaise (that’s how we can recognize what they were talking about), were obviously syndromes, have no single necessary cause such as viruses, and don’t need to be enshrined. This is another emotional attachment.

Her third emotional attachment is to “incurable.” Well, if that’s what you want, have a nice life and don’t bother other people. Apparently she would prefer that Michael die than be cured. Nice.

Starshaped has an emotional attachment to peer-reviewed FDA-approved drugs. You will be waiting a long time because there will never be synthetic drugs that cure postexertional malaise and MCS. Just think about it. There will probably never be synthetic drugs that are antiviral and also preserve life. I’m open to that one, though, as I don’t have a crystal ball.

ME/CFS causes will only be unlocked by observing the treatments (hint: not synthetic drugs) that work. That means that to find a cause or to (duh) find a treatment you have to try to treat it, not sit around and wish that someone somewhere would peer review something. Since synthetic drugs, surgery, and radiation are never going to cure postexertional malaise or MCS, and are probably never going to cure viruses, there is never going to be any FDA-approved peer-reviewed treatment (that cures).

ME/CFS and MCS, probably along with MS and a bunch of other illnesses, are outside of the paradigm that the FDA/drug companies/etc. uses so are unlikely to be solved by peer-reviewed journals.

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Aylwin Catchpole July 30, 2009 at 10:48 am

To re-post a “do not repost” internal communication is just plain rude, & your rant against the best activist-advocate I’ve ever known for ME in my 23 years of being ill (leaving you in the dust Cort), borders on psychotic. ME is ME, CFS is an invention of the CDC, I was there & saw it all happening – with horror, as I’m Canadian & was Dx’ed with true neurological ME before the idiot coverup in the US. We hear about these miracle cures all the time with about the same amount of research backing, how is this any different? All I can say that is positive is that I’m glad Mike is better…for now, anyway. Aylwin

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cort July 30, 2009 at 1:31 pm

Mike is doing very well – he’s working out rigorously – he has biceps the size of baseballs. Instead of avoiding exercise because it’ll make him worse he’s looking forward to his exercise sessions because they make him feel better! It’s an amazing thing.

I think Mike has gone about this in a very responsible manner. No one is asking patients to flood this doctor’s door. No one is saying the cure for ME/CFS is here. Indeed we were at pains to point out that there are aspects to this treatment that will make it hard to reach many ME/CFS patients. But it is an astonishing story.

I didn’t have many compunctions about reposting Jodi’s e-mail. Once she posted it to hundreds or thousands of patients it demanded a response and people had to know what I was responding to. I don’t know why she tried to kept her views within her own clique. Perhaps she sensed she was going too far? People e-mailed me her e-mail immediately.

No arguments about the CDC creating the CFS name. Maybe I’m missing out on all the ‘miracle cures’.

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drew August 1, 2009 at 5:30 am

“the best activist-advocate I’ve ever known for ME in my 23 years of being ill (leaving you in the dust Cort)”

Aylwin–

That is simply ridiculous. I’ve had this illness for nearly 25 years, and I’ve never even heard of Jodi Bassett. Cort has worked tirelessly on this website (“Bringing the Heat”) and on “Phoenix Rising” to help bring information to the ME/CFS community. He has interviewed physicians and patients, and communicated their thoughts to the rest of the community. With the blogs and message boards on these two websites, he’s created public forums for us all to share our thoughts and to learn from each other. Cort has made an enormous contribution to our community in doing so.

When you have something reasonable to say, please say it. Otherwise, don’t waste everybody’s time here.

Drew

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Mr Skeptic August 3, 2009 at 4:01 am

Cort, Please see this link for information on Homeopathy. http://www.quackwatch.com/01QuackeryRelatedTopics/homeo.html
Very few good quality scientists waste their time on this subject.
See Wikipedia entry on “Neural Therapy” http://en.wikipedia.org/wiki/Neural_therapy It contains the following quote:
‘There is no scientific evidence that neural therapy is effective in treating cancer or any other disease.[1]. It has been used to treat pain disorders, though there is not strong evidence to support its efficacy.[2] It is practiced mostly in South America and Europe.[1] [3]‘
I’m very surprised at some of your remarks at the way mainstream science works. It’s far from perfect and has made a complete ass of itself a number of times ( look at Barry Marshall’s work on Peptic Ulcers http://en.wikipedia.org/wiki/Barry_Marshall ). But as “starshaped” correctly pointed out, this system serves to protect patients from dubious Doctors and/or treatments. People can die if treatments aren’t properly tested. Or if they’re lucky they just get fleeced for large sums of cash. The proper testing is done in mainstream medical research. Do it any other way and you are wasting everyone’s time.
I cannot stress this strongly enough : this illness will only be cured by proper, rigorous scientific research done by proper scientists. Anyone doing anything else is wasting their time. This is not an opinion but a statement of fact.
As regards this particular case – it’s teriffic that this man has found a successful treatment. His illness differs from mine in a number of key ways, but until some proper scientifically verified diagnostic tests appear then patients with all manner of illnesses are given the “dustbin diagnosis” of “CFS”, “ME”, “CFS/ME”, “Post-Viral Fatigue Syndrome” or whatever the flavour of the month is with the particular Doctor you see. It’s not appropriate to criticise this man for getting well – quite bizarre in fact, even if he did have some other illness. If the Doctor who apparently cured him wishes to help as many patients as possible he will, of course, subject his treatment methods to the normal medical processes. In that way, patients worldwide would be offered this treatment after it has been proven safe and effective in the same way that every other genuine treatment available since the dawn of medicine has been. There are no shortcuts unless you wish to risk killing people, or just defraud them.
The only way through this mess is with proper scientific research done by proper scientists. I repeat : anyone doing anything else is wasting everyone’s time.

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cort August 3, 2009 at 6:54 am

If proper scientists were interested in doing proper scientific research in this disease we would have less of a problem. The problem is is that the scientific community is, for the most part, not interested in studying how this disease is caused or how it’s properly treated. A quick look at Pubmed will clear up any idea that the common treatment procedures for ME/CFS are undergoing the scrutiny of the scientific community – they’re not. Nor is the scientific community avidly testing the effectiveness of neural therapy and other alternative treatments. Here is a study, though, indicating that homeopathy may be effective in fibromyalgia FM

In a perfect world every doctor would submit his results for review and publication. In our real world this almost never happens; doctors are doctors not researchers. Neither Dr Cheney, Dr. Peterson, Lapp, Enlander, Levine, etc, etc. have ever done this. Very few doctors in their entire careers will do this even once. Hopefully the doctor will subject his treatment processes at some point to the scrutiny of the research community. If he does he will be a distinct outlier.

The fact that most therapies utilize multi-dimensional approaches to this disease only complicates matter since the research approach is fixated in testing one factor at a time. If you’re going to wait for research community to start testing many of the therapies used to treat ME/CFS you’re going to have to wait a very long time.

So who is wasting time here? The patient who potentially waits for decades for the research community to get around to focusing on a treatment? Or the patient who makes an informed decision based on other patients results to try it (or not). I would suggest the former.

By the way the Wikipedia article has been changed since you last read; it now contains a highly positive review of Neural therapy – such are the whims of Wikipedia.

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Keith August 3, 2009 at 4:49 pm

Jeez
Why would anyone be upset by a story of recovery. If your saying ME and CFS are 2 different entities I feel you are just splitting hairs. There is no ME diagnosis in the USA so obviously many cases in the US labelled CFS would be ME in canada or Britain. I for one don’t want to wait 10 to 20 years or more for the scientific community to find a proven treatment for CFS or ME. It is my body and if something has been shown to help people with CFS and shows little apperent risk it is my decision whether to tryit or not or put any hope into it. I don’t want Jodi Bassett or anyone else keeping me fromthat information or scaring people in the future from publisizing a newtreatment orsupplement that might help me.
Sometimes I honestly feel that there is a anger in some people when they here someone else has recovered because of the natural “why can’t it be me” feeling. Well someday it may be more of us if we are allowed to hear about treatments that have helped others. I mean I for one don’tthink I will ever see the FDA or CDC say ” here is the cure for you all”. It will be found by some pioneering doctor or team somewhere and I’m not going to wait decades before the governments of the world accept it!
Keep up the good work Cort. I hope all of us with CFS/ME will keep our hopes alive for a better future and health but we have to be brave and support each other not attack the ones trying to help us!

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Mr Skeptic August 4, 2009 at 5:16 am

Cort, Thanks for replying.
Doctors are researchers. How do you think any illness or disease is ever treated ? Because the Doctors who made the original breakthrough subjected their procedures to scrutiny by their colleagues, the treatment was thoroughly tested and refined, and was finally presented as a safe and effective treatment on the front line. The Doctors you mentioned have all published papers – this is how science works. Doctors who don’t attempt to have their work published or properly investigated are the “outliers”, and there are other less polite names for them. Medical research is a bloody slow and infuriating process. But it’s there to protect us from incompetents and fraudsters. I’ve been ill for over 14 years and have lost the best years of my life. I still intend to enjoy my later years as a healthy person. That’ll happen a lot quicker if good quality scientists are encouraged to investigate this illness. Take a look at this entry on Pseudoscience :
http://en.wikipedia.org/wiki/Pseudoscience ( P.S. Wikipedia is a good “jumping off” point to investigate something but it contains a lot of nonsense as well, that’s why we have peer-reviewed journals )
Look particularly at the section on “Lack of openness to testing by other experts”. How much “CFS/ME” research does this sound like ? There are enough quacks and fraudsters hanging around this illness preying on very ill people, it’s high time we had some proper scientists involved so we can all get our lives back. Surely no-one would argue with that ?
It seems from these blogs that your heart is in the right place. Please be very careful in your dealings with this current matter as you have a reputation of your own. The fact you are having these discussions says a lot for you and I hope you continue to push for the end of this illness. I personally believe it’s coming, but as I said before it’ll only come by following the proper scientific approaches. I think you misunderstand what I mean by that – if any Doctor with some radical new approach made a major breakthrough then he knows that the only, only, only, only, only, only ( I could go on) only way to get the treatment accepted ( that is, verified as a genuinely effective treatment and not a means to make money ) is through the normal scientific process. Anyone who claims a breakthrough but doesn’t subject it to the normal scientific process – well, please, there are some alarm bells ringing big time. If there are breakthroughs – and I think this is likely – then research can be accelerated and it needn’t be the ten or twenty year scenario.
I hope you understand where I’m coming from. In many of these blogs people take things personally when they aren’t intended as such, and I can’t help feeling 99% of us are actually on the same “side” as it were….

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Been There and Done That August 5, 2009 at 11:37 pm

“There are enough quacks and fraudsters hanging around this illness preying on very ill people”

That is very true, but on the other hand… I’ve told many people how “alternative medicine” (pre-western medicine) has helped me and yet some dismiss this despite my own testimonial.

Don’t knock it until you’ve tried it and don’t knock down people who have tried it and who have had success. I’ve worked in the medical field and have seen the power and influence these pharmaceutical companies have over physicians. Many physicians now are legal drug deals.. IMO.

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Chris August 6, 2009 at 10:33 am

I think Cort did just the right thing, and find Jodi’s letter just plain awful–and I find the Hummingbird site pretty dicey too, though it contains much good material, highlighting Byron Hyde’s contributions. But he and they both attack the notion of fatigue as central or meaningful–and yet recent research has shown that it is indeed central, measurable (impedance cardiography, repeat VO2 Max testing), and specific in its nature. Genetic work shows that there are at least 7 varieties of whatever we call it–not just one surrounded by a mess, as Hummingbird would have it. Peer group assessing has passed some totally empty and even fraudulent studies–the appalling and very expensive one purporting to show that a “low-fat diet” did not help lower the rates of cancer or heart disease among women is only one of many. Other research shows clearly that the nature of the funding source has a large effect on the outcome of “research.” One might wish that medical research was indeed a pure, reliable method of weeding out truth from fiction, but as currently practised it is, alas, not quite that.
So since this is part of the situation we are in, let us be thankful that apparently one member has found health and freedom, and then pay attention to how he got there, and consider whether there is something there for us too. I look forward to further updates on the others now undergoing similar treatment, and in the meantime am exploring the possibilities of things like BioMats that I would not have considered a year ago. As long as we live, we can learn, and particularly from others in the same or similar boats. Keep going, Cort, most of us are behind you on this. Chris

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Mr Skeptic August 7, 2009 at 10:39 am

You seem to be making a few assumptions about me. I have tried certain “alternative” treatments. None of them helped and one was clearly a scam. That doesn’t mean all “alternative” treatments are scams, or that they might not help someone else. Given individual physiological differences, some treatments will help some people and be useless for others. Of course we have to be careful about what we mean by “treatment” and also defining “help”.
The point I’ve repeatedly tried to make conerns scientific method as the only means of finding a test and treatment for this illness. I’m really repeating myself now so I think it’s time I shut up. Anyway, don’t take my word for it – take a look at the history of every genuine treatment available today……

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Mike Dessin August 8, 2009 at 9:17 am

I have approached persons in the ME/CFS medical community. There is unanimous agreement, after matching my labs with symptoms that I indeed have ME. True neurological ME, which is triggered by a virus causing a disease process.

I do disagree with the mixing of ME into the CFS spectrum, as it is a very distinct disease in itself. I openly voice my opinion about this.

I have been truly blessed at another chance of life, many are not so fortunate.

Most folks who do get well form this horrible disease, and there are not many, mainly due to lack of access to proper treatment choose to run away from anything having to do with this disease. Run away and live life once again. Time with friends they haven’t seen in years. Holidays with families, raising their kids, and being as active as possible.

Never wanting to think back of the brutal injustice this disease had laid upon them.

I know there are voices out there that can’t be heard. I was one of those voices. Trapped in a black room with ear plugs in. Unable to speak, listen or even be touched as it would make me so sick.

I even got to a point that a mere thought process was too stimulating to my nervous system. I was left for dead.

I choose not to run away, I will do everything in my power too make sure this does not happen to others. There are many political barriers that need to be overcome to make this happen. I can’t snap my fingers and help the world, it just doesn’t happen that way.

I have gotten my miracle, but there is no time for celebration, while others are suffering beyond what most humans can comprehend.

I get dozens upon dozens of emails from folks suffering with ME, and I can relate to nearly everyone, symptom to symptom and on to the neglect and abuse.

I will do as much as I can until there is no more folks with ME suffering, even if it takes the rest of my life.

Kindest
Mike

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jessica marotta September 7, 2011 at 6:32 pm

Thank you Mike for sharing your story and congratulations on your recovery. I for one would be interested to hear about it,why wouldn’t people[odd] because honestly what you had sounds just like m.e. to me,and i saw that hospital photo of you pre recovery[severe m.e.] Thank you for sharing and congrats on regaining and enjoying your life.happy for you:)

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jessica marotta September 7, 2011 at 6:42 pm

Oh and one more thing,I don’t think most of us can just recover with supplements.That being said,who am i to judge,..with thee right doctor tailored to your body,etc…it seems possoible.clearly,most of us don’t have that access and/or care and i think thats a very big point.huge in fact….of course every single miracle cur isnt going to work.m.e. is very complex i think….but i can’t see how people just dismiss your story it reads like m.e. [totally] I think we are all so angry at misunderstanding by the general public and even by some [not all] doctors,that we can shut down,as its too painful to hope .I think we need to try and keep some optimism in our hearts, and express gratitude to people like you who still advocate even though human nature would say [never look back if you get cured,i think youd jut want to run away.period.bless you for not forgeting everyone

Keith August 9, 2009 at 1:12 pm

Bless you Mike. The help is most welcome and appreciated!

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Dianne Black August 9, 2009 at 3:56 pm

I have followed Jodie Bassett, for a few years now, and agree with her totally.
ME is NOT CFS. How do I know, I have been suffering with ME for 8 years. It has been progressive. I have done as much as I can to overcome this illness.
It has now caused me problems with the kidneys and bladder, and shocking degenerative disease. It annoys me when I read miracle cures.
If you have the CURE, make it known to the CDC. We all what to know what it is.
I absolutely agree with Jodi, ME is in no way related to CFS.
Jodi Bassett Web Site is the best I have read, through these horrific years.
It is situation like what you are doing, that cause problems for very sick people with ME. She has worked tirelessly when very sick, to get this recognition, so don’t slam her, over some Quackery.

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Kelly August 14, 2009 at 5:21 pm

Dianne: Okay, let’s say you’re right. “ME is NOT CFS.”

What is your point? Are you saying that CFS patients are not deserving of treatments, or that CFS isn’t “real”? Do you actually think that patients diagnosed with CFS don’t get progressively worse and suffer kidney problems and other degenerative issues?

If you’re waiting for “the CURE”, good luck with that one. In the meantime, hundreds, if not thousands of courageous, brave, patients suffering with ME and CFS are recovering and have recovered. I’m sorry if you haven’t but perhaps a check of other sites besides Jodi’s might be helpful. Sites that are open to new treatments, and not waiting for the CDC and pharmaceutical companies to come out with some ridiculous miracle drug. Mark my word, it ain’t gonna happen.

And if you’re taking a lot of pharmaceuticals, you might check the side-effect profiles, as some of your worsening just may, MAY, be due to the drugs, and not your illness.

Mr. Skeptic: The Quackwatch site is a joke. The man who used to run it has LOST EVERY COURT CASE he’s initiated. If it’s a drug, he likes it, if it isn’t, it’s QUACKERY.

Regarding homeopathy, please do some research next time.

In fact, homeopathy has been proven to be effective in many, many ANIMAL studies — where there is no possibility of a ‘placebo’ effect.

Here’s a review of 126 studies, just to start with:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1475939

Now certainly Dessin’s doctor is using homeopathic remedies in a non-traditional manner, but other docs, like Deidrich Klinghardt M.D. have been doing the same for years with success. I don’t understand it, and I’m sure traditional homeopaths would not agree with the approach, but I’m open to the possibility that it may work, and perhaps has worked.

Everyone chooses their own path. I for one choose to be open minded. Jodi and others I guess choose to shut their minds off (out of bitterness?) to anything or anyone that dares claim they’ve recovered or are recovering.

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Mike Dessin August 14, 2009 at 5:21 pm

Dianne,

Thank You for your comments. Yes ME is not CFS. There is a chance you might not have been able to read through the entire story due to neurological difficulties.

You said “itis a situation like what you are doing, that causes problems for very sick people”

No, thats not true. It’s statements like Jodi’s, that causes problems for very sick people.

Nor myself or Cort have ever promised anyone a cure but simply relayed my story of getting well. If I got well and several others have gotten well at my clinic. I think there is a possibility that my treatment may have broad applications amongst those with ME.

Also, I always admired Jodi’s work. Thats why I’m particulary dissapointed in the irresponsible statement she wrote about me. Especially after what I have gone through and have only tried to help others whenever I can.

I’m not going to discuss this anymore, as there are more important issues to worry about than Jodi’s bogus statement.

I wish her the best, and truly hope she finds her way back to health someday. But I think it may be difficult, as she posts a rule on her site saying she doesn’t want to hear about cures.

Take Care

Mike

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L. C. Daniel August 21, 2009 at 8:47 pm

Wow. This seems to have been turned into an ‘us’ against ‘them’ scenario by Jodie’s response to Mike’s story, and I’m probably going to be the bad guy here. Being fairly new to this particular community (but not to the disease, been long over a decade there) you can all feel free to castigate me and I will still have lost nothing I didn’t already have when I got here. But I’ve thought the unthinkable, now I’m going to say the unsayable.

I would strongly suggest that Jodie might want to see about getting a new neurological workup done, and as much as everyone seems to loathe the word, see a psychiatrist for an evaluation. Not a psychiatric evaluation for her ME, but of her current mental status. Now, before everyone goes staggering off in wobbly, excited, hysterical little circles screeching and waving their hands in the air (if they’re luckier than most and can actually do that!) take into consideration the claim made on Jodie’s website that “Myalgic Encephalomyelitis is a loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions (cognitive,…)” http://www.hfme.org/themesymptomlist.htm {see paragraph 16 under the heading: A brief overview: What is M.E.?} No argument there from me, but with cognitive functioning being right up there at the top of the list, with the ability to worsen, perhaps it’s time that she might want to have that checked for her own wellbeing.

It’s one of only two things that I can think of that might make a person issue such a convoluted, childish response. The other cause for it is almost as difficult to see happen.

I remember the hfme website from when it was first started, just a page or two long. At the time, I was searching for websites that carried logical, sensible, usable information. I decided not to return to the hfme site, because it contained very little factual information, and a great deal of personal opinion from someone who appeared to be using it to voice much subtly expressed anger, and one could also tell that the writer felt that he/she was the only one on the planet that actually really knew anything about ME at all. But right or wrong, the site did bring the writer one thing: attention. Which could explain the ridiculous ‘us or them’ type of response she made to Mike’s story, which she unleashed to an incredibly large number of email addresses across the web. If Mike’s story should possibly be the harbinger of a means to treat ME, there would be no more attention paid to hfme. Hfme would no longer be ‘The One’.

No more attention.

One of the main things that ME frequently cuts out of one’s life when it strikes is companionship. Attention. Too much unwanted solitude can foster a desperate need for attention. Sometimes desperate enough to carry on a ’cause’ for years. If one can make oneself appear to be THE authority on ME, that would certainly bring attention. And even though over the last few years hfme has been operational it has carried much more actual information than those first few pages did, that subtle undercurrent of ‘I’M the only one that knows!’ superiority was always there, always that sad demand for attention. Which is why, when stumbling across it several more times over the years and looking the site over ‘one more time’, I always moved on.

I just don’t tolerate condescension all that well, I guess, whatever the reason for it’s occurrence.

Whatever the cause of Jodie’s insensible tirade against someone else’s success story, I do hope she gets help for it soon.

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Dianne Black August 23, 2009 at 4:17 pm

LC Daniel! Here we go again, attacking Jodi. I don’t agree with your assessement of Jodi, I think you have a major problem, of your own. I think you are the most condescending person I have heard, through my years of dealing with ME. Who gives you the right to put down someone else because they don’t agree, with a particular point of view. I think you are just despicable. I don’t know Jodi that well, but I totally agree with what she says about ME. Bearing in mind her information is coming from quallified quarters. What I don’t agree with is someone who says I have the CURE, when clearly they have stumbled on a therapy. Congratulations to Mike on his recovery from what ever illness he had. Mike says ME, but I would have to say that is debateable. I have ME so they say, but I am skeptic about my DX. There is NO absolute proof. Byron Hydes version is for me the closest to my symptomology. I have been down the Homepathic route, and it did absolutley nothing for me, I am sure I have bought the Health shop out, and all it has done for me is cost a lot of money, and made me sicker, if that is possible.
Kelly questions me on folk with CFS, I have nothing against people who have a CFS diagnose, and never said so in the first place. Kelly you were immediately on the defensive. I want to see ME to be just that. ME has been around for many years, until some bright spark wanted to change the name. CFS is just a symptom of ME.And of course anyone can get Renal Failure etc. I didn’t say they couldn’t, but in my case it is quite different. Look I could go on about this forever. I had a good old chat with the Doctor the other week, and he totally agreed with me, that there is so much physco babble out on the Internet, about these illness’s it is plain crazy.
Putting Jodi Bassett down because she doesn’t agree with you, dosen’t make you right.
Get a life L C Daniel. You need some help.

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Mike Dessin August 24, 2009 at 5:48 pm

Dianne Black..OYVE…It’s pretty difficult to put LC Daniel’s point of view down and defend Jodi at the same time.

Strictly due to the premise of your argument against him… applies to Jodi as well.

Jodi is the one who decided to essentially put out a hate mail attacking myself. Yes…a chain email, to hundreds of folks.

I don’t think LC Daniel nor myself or any other persons would do that to someone for simply sharing their story of recovery.

Dianne….And I will say this again, I never claimed a cure, my doctor claimed he cured me, as I said in the story. As of now, that SEEMS to be true.

However, I feel there just might be universal applications for use of my therapy, with other folks suffering from ME.

Jodi has done a lot of great work, but this past piece she put out, was outright irresponsible to me and my family as well as others suffering with ME.

Thank You LC Daniel and Dianne for your comments. Hopefully we can all work together to bring about positive changes in the ME community as well as other neurological illnesses.

Kindest

Mike

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Tom August 30, 2009 at 8:36 pm

I just went to Jodi Bassett’s guestbook.

You are right. Please delete my previous post. Man, I’m relieved.My wife is real sick with this and joined this site a few days ago. I was just checking things out for her. She’s got her hopes up about Mike’s recovery. I’m a bit skeptical and want to protect her from getting scammed. She’s pretty depressed and I’m afraid she’s going to give up soon.

Peace Out

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Terri September 1, 2009 at 2:30 pm

Wow-I’m just reading this blog post and thread. I have heard of hummingbird’s guide to ME by Jodi Bassett. Honestly, I find the site too depressing to read. It offers no hope. I found it when I was first diagnosed and it did nothing but frighten me.

To read that she sent out a chain email dissing Mike’s recovery and denying he was this disease is appalling. Why go to such great lengths to do so when she has little knowledge of Mike.

I don’t understand why some people are so upset with someone who was extremely sick recovering from this illness. If we wait around for mainstream western medicine to help us we’re doomed.

I want to thank Cort for bringing this up. I’m sure it wasn’t an easy post to write but it needs to be aired out in the open.

Mike’s story gives me hope. If that gets me through another day of surviving this illness then I’m very grateful.

Thank you to both Mike and Cort.

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Truff October 18, 2009 at 2:24 pm

I have M.E./CFS or whatever the heck it is labelled. It has certainly always FELT primarily neurological to me, neuromuscular to be precise if that is the correct way to term it.
It also feels very ‘viral’ in nature. I can’t be bothered going into the many individual symptoms just now but, based on what I’ve written above and my slight familiarity with Jodie Bassett’s website, I presume I have the ‘real condition’, the ‘M.E.’ that she is talking about as opposed to the ‘just tiredness’ which she so hates.
I found Jodie’s site a couple of years ago and thought it was great at first – so full of info which I so badly wanted in my confused state.
However, I am now getting increasingly p!ssed off with pressure from all directions to justify myself and my illness all the time – from GPs (most of whom think M.E./CFS is purely neurosis), everyday people who think I seem fine and ‘look so well’ (when they see me on the occasions I’m able to be out or with them!), and, yes, pressure from Jodie Bassett too.
I have been diagnosed with ‘CFS’ at a specialist NHS hospital clinic. That just confirms what I already knew – I have a ‘real’ physical illness that (oh no, shades of Jodie) is more than just tiredness, more even than ‘just’ exhaustion.
I haven’t read every single bit of this thread to which I’m replying, but I did get the email of Jodie’s above as I signed up to her site previously.
I was a little peturbed by it – it’s all a bit too much, too political for me.
I do agree that The Lightning Project and similar touted ‘cures’ bother me somewhat. The LP is basically CBT and therefore is treating M.E. as primarily a mental illness at the end of the day.
Also at least Jodie is trying to help in her way, she has certainly got balls!
I just hope research continues to progress towards full understanding of this condition so we can have a standard and appropriate approach to it from ALL DOCTORS and ALL OF SOCIETY.
It will be so much easier then!

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islandgirl December 4, 2009 at 9:14 am

Unbelievable, that people think nobody knows what causes ME just because the medical profession says so. How much more evidence do people need that doctors who treat chronic diseases are merely selling drugs and don’t know jack about health, they are not curing anything? I have had what has been referred to as ME or CFS for seven years now and I am almost over it. I have found, through my own painstaking research through severe brain fog and agony, that I have merely been misdiagnosed. I had severe intestinal dysbiosis, intestinal hyperpermeability and now, even after fixing those, I am left with the subsequent resulting adrenal exhaustion and heavy metal poisoning. These are all fixable and I’m doing it now. I’m already 85% “cured”.

There are certain alternative doctors who have been to school to learn how to fix a broken down body. I am going to start taking these classes myself, soon. I have learned way too much about nutrition and supplements to let it go to waste. And my previous degrees in accounting and finance no longer interest me. Saving my friends interests me more.

CFS or ME is just something doctors label us with because they don’t know what it really is that is making us ill. And they don’t know because they don’t routinely look for the root cause of anything. Doctors treat symptoms, NOT the root causes of disease. Virtually all CFSers have dysbiosis and hyperpermeability. In fact, these are the causes of most chronic diseases. The sooner people open their eyes and believe it, the sooner they will be able to seek the proper health care practitioner to fix it, NOT a medical doctor.

I don’t know what exact problem Mike really had but I hope he does a CDSA (Comprehensive Digestive Stool Analysis) to check out the state of his gut/immune system. Doctors don’t know anything about this test, even digestive disease specialists. I wish I could sue mine for failing to see that my pancreas was not producing sufficient digestive enzymes or hydrochloric acid for digestion, that my intestinal lining had been compromised because of massive amounts of bad bacteria and yeast, that there was no good bacteria to guard the lining’s integrity, that I was extremely intolerant of wheat and dairy foods, that my liver methylation cycle was not working and that I wasn’t crazy!!! All these things, save the latter, can be established from the results of a CDSA.

After a few years of study, I can look back on all this and see it quite clearly. Virtually all CFSers have these digestive complaints, even if they have no obvious signs of indigestion. It took me years to figure it out when I could have been fixing it. You will have a problem if you believe doctors who say that leaky gut syndrome is not real or that yeast is a myth. They are harder to fix than you think, but it is possible. If you have CFS, then get off your ass and have a CDSA done, even if you have to drag yourself around to get it. Then eliminate all problematic foods, take digestive enzymes and whatever other supplements you need, and start putting your body back together. What else do we have to do? Lie there and suffer???

It took me a year to get over the dysbiosis on a highly restricted diet while taking yeast and bacteria killing supplements. Then the liver started working properly again within 2 weeks. It’s not impossible, you just have to find the right person to help you. Look at beatcfsandfms.org. They can help you select a doc. I found one on the internet and he knew exactly what to do. Quit listening to the medical profession and any morons who think that medical doctors really are in the “health care” business. This industry profits more the sicker you are. They have no real “cures”, they just sell drugs – THAT is their business.

My last problem to fix? The heavy metals that have built up in my system while digestion and the liver weren’t working because they were overwhelmed. This will probably take another year to 3 years to chelate them all out. So the total fix is going to be somewhere between 3 and five years, I’m estimating. So don’t dilly dally. You may even decide you feel so good after the gut fix that you don’t want to worry about the metals, but I’m greedy for my health to be fully restored.

Incidentally, the reason why supplements work so well, different ones for different people, is because they are in concentrated form so the body is able to use some of these nutrients, not like the nutrients that are passing right through the body because digestion can’t break them down and assimilate them. Good bacteria in the gut make certain enzymes that digest food, certain vitamins, components of the immune system, and they guard the integrity of the intestinal lining. If this is messed up, so are you. Much of the body’s serotonin is also produced in the gut. But do doctors try to look for an intestinal problem when somebody is depressed? Or do they just shove some antidepressants down their throat? See where this is going? If you have ANY chronic problem, like even high blood pressure, get a CDSA done and prevent more problems down the road. The guts are responsible for more than you know. I wish I had somebody to tell me all of this years ago, I’d be fixed by now. Good luck.

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jessica marotta September 7, 2011 at 6:46 pm

we need to try and support each other not rip each other apart. I think we have enough of the later. I honestly don’t think most of us have access to a dr who could tailor make a nutritional/supplementation program,etc….if we did ,perhaps?lets at least be happy for mike

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