Andrew Wakefield links autism to CFS

[Helen]

@S.A.
Thanks for sharing your story. You have indeed done/made a great job.

I was hesitating about my post as the correlation between CFS and ASD´d might cause sadness.
Though, I think it is worth thinking of this, as it is both possible to treat to some extent, and it also seem to be possible to prevent autism by taking folate as shown is this big study.
http://www.ncbi.nlm.nih.gov/pubmed/2340368

So, if diagnosed with ME/CFS or B12/folate deficiency, I think it is a good idea to let children be gene tested if possible.
If they are lucky, they didn´t inherit "bad genes" from the other parent, and if (these polymorphisms are quite common in a normal population) supplementation could probably prevent sickness. Neural tube defects are told to be less common on Sicily , though the MTHFR mutation is more frequent . Folate rich food has been proposed as the key. If methylation works and the glutathione is produced as expected, and the binding with glutathione also works, things should probably be O.K. More research is needed - as most studies are ended...

 

[Wayne]

Before I got ME/CFS I was a much more social and mentally sharp person, with a knack for personal interactions. I had tons of friends and, for the most part didn't have any social phobias of any kind. I was involved with theater groups since age nine!

For me, one of the most pernicious aspects of CFS has been my cognitive breakdown, at many levels: memory loss, difficulty concentrating, loss of mental sharpness, brain fog, major scatterbrain, even difficulties with speech at times. Most of the time I feel like I'm not fully awake, which I'm sure the decade-plus of awful sleep has something to do with it. Often times I am so very mentally fatigued that I found myself extremely introverted and unengaged in social situations.

Hi Antares, thanks much for the above description of the cognitive and social difficulties you deal with (very similar to mine). Though I've had all my amalgam and metal crowns removed, I sometimes wonder if some of my cognitive and brain energy difficulties are still related to lingering heavy metal toxicity. Your decription reminded me of an article I read a couple years ago by a man who greatly benefited from having his own amalgams removed. I found his concluding paragraph to be especially interesting. Here's the article:

My Mercury Story

In the mid 90s, despite being athletic and energetic, I began experiencing various health ailments. These ailments worsened and grew in number year-by-year. By 2000, I had acquired 17 specific physical ailments ranging from fatigue to immune weakness to constant ringing in my ears. I could only work about 4 hours per day and had to take daily naps. I knew that something was seriously wrong.

I finally stumbled upon the cause of my problems while speaking to a friend about her health issues. She told me she had Chronic Fatigue and had healed herself after 5 years of visiting doctors and getting nowhere. She told me that she had her amalgam ("silver") dental fillings removed one-by-one, as she could afford it, and it had changed her from a bed-ridden state to a normal, working person. She told me something no dentist ever had:

Amalgam dental fillings contain mercury, the world's most toxic, non-radioactive metal.

I started conducting research on the Internet and found that I was not alone. Many other people were suffering just as I was and they had determined the problem was their dental fillings as well.

After spending numerous hours researching this issue, I had my amalgam fillings removed in couple weeks and my life changed forever, and it happened virtually overnight. A few years later, I realized that not only had my physical symptoms gone away, but a number of phobias vanished as well. My relationships improved, I became more social, my memory improved dramatically, and I realized how life is supposed to be lived.

Now, looking back, I realize that I lived most of my life with a number of negative personality traits and emotional ailments that were actually caused by mercury. My bad memory, extreme shyness, very low self esteem, fear of commitments (especially in relationships), history of suicidal thoughts and fear of confrontations is now gone, not to mention horrible depression, and all of these changes have dramatically improved the quality of my life.

 

[twilightsun]

I didn't see it mentioned elsewhere in the thread, but Andrew Wakefield is a fraud.

The study that started this horrible misinformation was a fraudulent study conducted by Andrew Wakefield. Data was falsified in his 1998 study. Wakefield’s co-authors withdrew their names when they discovered he’d been paid over 435,000 GBP ($674,000) by lawyers who planned to sue vaccine manufacturers. And boy, did their investment pay off. The vaccine scare his sham of a study created drummed up plenty of business for personal injury lawyers. Of course, all of those kids who didn’t get vaccinated because of the scare ended up causing an outbreak of measles in the UK.

The journal that published his infamous "vaccines cause autism" study printed a retraction. I wouldn't take anything that man ever said at face value.

That being said, I do have Asperger's, as does my son. We were both born this way - difficult, colicky babies with very high needs. I'm pretty sure my dad has Asperger's, too.

But I'm the one with the CFS. Genetic expression is a funny thing. Being slowly poisoned by the world you live in hits some people harder than others, and from a common sense point of view, it makes sense that it would hit those of us who are already predisposed to having "issues" would be hit harder than others.

 

[Wayne]

I didn't see it mentioned elsewhere in the thread, but Andrew Wakefield is a fraud.

Everybody's entitled to their opinion. Many very intelligent, thoughtful and caring people who are deeply committed to their children's welfare believe otherwise. I suspect many of these people have learned not to believe everything they read in medical journals, which are often hardly more than biased outlets for mainstream medicine orthodoxy (think profits).

 

[twilightsun]

Everybody's entitled to their opinion. Many very intelligent, thoughtful and caring people who are deeply committed to their children's welfare believe otherwise. I suspect many of these people have learned not to believe everything they read in medical journals, which are often hardly more than biased outlets for mainstream medicine (think profits).

The inability to replicate the man's results in subsequent studies and the falsification of data ("it was utterly clear, without any ambiguity at all, that the statements in the paper were utterly false."), the testimony of a former graduate assistant concerning the data that did not support Wakefield's hypothesis, and the fact his sample size was only 12 in the first place make it hard to justify belief in his "findings." Many of the statements made in his paper have been proven false.

Is it possible that he was wrong, but not dishonest: that he was so incompetent that he was unable to fairly describe the project, or to report even one of the 12 children's cases accurately? No. A great deal of thought and effort must have gone into drafting the paper to achieve the results he wanted: the discrepancies all led in one direction; misreporting was gross. Moreover, although the scale of the GMC's 217 day hearing precluded additional charges focused directly on the fraud, the panel found him guilty of dishonesty concerning the study's admissions criteria, its funding by the Legal Aid Board, and his statements about it afterwards.

A more recent study with a much larger sample size (~1000) showed no increased risk of autism when following a full vaccine schedule.

Maybe it's because I have an autistic brain, but despite my graduate studies being in psychology, not medicine, I see no logic or basis for accepting the results of flawed methodology, an anecdotal report on 12 patients, to generalize causality where the sample size alone is enough to make the findings suspect. I had a larger sample size for my Master's thesis, and I had to admit in my findings that the results were too sketchy to draw any significant conclusions from.

The media sold the vaccine/autism scare because it was catchy. Celebrities latched onto it and gave it false credibility. No one bothered to question the methodology or the raw data for years. I get that parents have latched onto it emotionally because it made sense at the time, and everyone wants a "reason" for what's "wrong" with their kids, but as a parent of an autistic child who also has autism herself, I think it's misguided trust to go on believing in Andrew Wakefield, who has been sanctioned for multiple ethical violations and had his medical license revoked.

I understand that there may be other, valid concerns about various vaccines and their use in certain vulnerable populations, but the fear of autism has no scientific basis.

 

[Dufresne]

Paul Cheney mentioned in his 2009 lecture that autism and ME/CFS are both diseases characterized by 'oxygen toxicity'. In my experience this problem causes the excitotoxicity, dysbiosis, and gut problems in my ME/CFS. It wouldn't surprise me if it incites these same complications in autism too. According to Cheney oxygen toxicity leads to an energy deficiency that makes it extremely difficult for the cell to defend against intracellular infections. So intracellular infections, dysbiosis, excitotoxicity, and gut problems: those are the primary similarities I see and can be explained by oxygen toxicity.

I've had symptoms of this disease since early childhood, though I don't think I could have been diagnosed, even using modern guidelines, for either ME/CFS or Asperger's at the time. I tested as borderline Asperger's online but don't consider this as anything more than a measurement of my introversion. Understanding the emotion of others, the hallmark Asperger's symptom, is something I've never had problems with. In fact I'm probably more sensitive to the facial cues indicating emotion than most people. That said, I find excitotoxicity pushes me further into my head as lights are too bright, social situations are overwhelming, etc. I often wonder how one can be extroverted with ME/CFS, especially with thick brain fog. How can one prefer the external when nothing outside feels real?

As for saying the diseases are the same and it's just a matter of age of onset: do those suffering an ASD usually go on to develop PEM? I don't believe so.

 

[Helen]

As for saying the diseases are the same and it's just a matter of age of onset: do those suffering an ASD usually go on to develop PEM? I don't believe so.

I don´t think anyone say that ASD and ME/CFS are the same (or with the same symptoms) , only that a blocked methylation due to genetics is an issue in common. The early onset affects mostly boys, and after 20 girls and women are more prone to develope ME/CFS because of hormonal differences.
I think Rich Van Konynenburg talked about this in his seminar http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/ Note that there are slides too to watch instead of the videos.

 

[Madison]

Hello,

To the autism/Aspie parents on here, I am so sorry that I do not visit this site enough.

I have to disagree about children with autism being fatigued, having dark circles under their eyes etc.. My son was born with a happy disposition. He has never been vaxed though...he never had a sudden regression in functioning. He has always tended to be on the hyper side. He is a vestibular seeker, very kinetic....always running and climbing, LOVES flying on airplanes etc..

For twiglight sun, have you ever met and talked with Dr. Andrew Wakefield? Talked to to him about his research in person? It may have already been mentioned here, but one of his colleagues, who wrote the 1998 paper with him, has been exonerated of all wrongdoing. This means that Dr. Wakefield has been exonerated too, even though it has not been done via paperwork and an official claim etc..

Also, twighlight sun, have you had your Nagalase levels checked? We had my son's levels checked. They were 1.4. He started immunotherapy (GcMAF) in September of 2012. Many of his autistic symtoms are gone. He is, by no means recovered, but he is a completely different child. A real human being, rather than an auto-maton. If you or your child have viruses in your brains and bodies, wouldn't you want those to be treated, even if it meant that you would lose you Aspie dx?

I had the Hep B series in the late 1990s,. b/c I used to work in healthcare (and I believed in vaccines). I also had 2 flu shots, one in the late 1990s and one in 2000 or 2001. Not sure if these affected my son or not. He was conceived in Novemeber of 2005. Born in August of 2006.

S.A., I will try to read your post now. My son's main MDs are Anju Usman MD (DAN!), Dr. Bradstreet MD, and Dr. Richard Frye MD Phd (for neuro and CFD Syndrome....after 3 fasting tests for mito, I still do not have a clear answer on whether my son has mito disorder.). I also just started working with an endocrinologist; my son is 7.5 years old and has qualified as failure to thrive for over 4 years. Unfortunately, I started with an endo who wants to "wait and see" rather than do more testing, so I wil be going for a second opinion ASAP. My son has not been on the growth chart for many years, and he is in the 1st percetile for weight.

My son continues to improve with Goleic injections. (Bradstreet has you inject it, I think if your child has severe oral aversions, like mine does.) We have done 6 batches of Bravo yogurt, which has helped to control yeast and diarrhea. I really think that my son needs a mast cell stabilzer, such as Gastrocrom, in order to get his diarrhea under control. I will talk with Dr. Bradstreet today.

Madison

Edited to add that my son is hyper. GcMAF has helped dramatically with his hyperactivity.

 

[maryb]

Very true we're all entitled to our own opinons - Andrew Wakefield is a hero in my book..
Also an interesting snippet - 3 of my relatives on reaching puberty developed Crohns Disease - link with the measles vaccinations???

http://articles.mercola.com/sites/articles/archive/2010/04/10/wakefield-interview.aspx
for anyone interested

 

[wastwater]

My cousin has crohns,maybe there is a common genetic trait

 

[maryb]

@wastewater
maybe but also the vacs?

 

[Madison]

The bowel disease in children who have autism seems to be related to viruses, so I am not sure about a genetic predisposition, except for a general auto-immune predisposition. No on in my family has ever had Crohn's, that I know of. My grandfather has pure red blood cell aplasia; I am not sure if this is considered auto-immune. My son's uncle has Grave's disease, starting at age 22. The same uncle has CFS/ME times 20+ years.

I am planning on becoming a patient of Dr. Bradstreet's myself, b/c I want to make sure that I am not retaining viruses. I do have some mild cognitive issues and low energy. I also have what would be "chronic disorganiztion". I will have a Nagalase and CD57 test(s) with Dr. Bradstreet to start.

 

[maryb]

I think more than a genetic link - our genes pre-dispose us to certain diseases, but they still need a trigger, this is why some people get things others don't, maybe there is a pre-disposition gene in our family and the trigger is the vaccination?

 

[lookinglass]

It just looks like old and empty speculation by someone whose claim to autism fame has since been shown to be false.

Esther12 you are wrong about Wakefield. He has been found to be right about the causes of autism symptoms in children, he has been targeted by the pharma industry and the media and villified and defamed. But he has survived and is still making an enormous impression on the issue of Vaccine injury. This is not the forum to discuss AW. But I have the right to put up his comments on CFS here.

 

[lookinglass]

I didn't see it mentioned elsewhere in the thread, but Andrew Wakefield is a fraud.



The journal that published his infamous "vaccines cause autism" study printed a retraction. I wouldn't take anything that man ever said at face value.

That being said, I do have Asperger's, as does my son. We were both born this way - difficult, colicky babies with very high needs. I'm pretty sure my dad has Asperger's, too.

But I'm the one with the CFS. Genetic expression is a funny thing. Being slowly poisoned by the world you live in hits some people harder than others, and from a common sense point of view, it makes sense that it would hit those of us who are already predisposed to having "issues" would be hit harder than others.

I have never read quite such a garbled collection of misinformation as your brief summary of Andrew Wakefield's career and his history. Please read his own book and inform yourself properly, "Callous Disregard'. And don't tell me he is a proven liar so why should you read his own words. Everyone has the right to be heard in self defence.
You have been feeding off the defamatory words of a certain Brian Deer, a paid hack journalist in the UK. Paid to destroy AW.

 

[cosmo]

Which raises a question. I have on occasion been asked if I have Aspergers (Asperger Syndrome). If, and I am not saying it is, CFS is a form of adult onset autism (and I have toyed with this idea before) then maybe that's why so many of us resemble Aspies, either superficially or completely. I wonder what people think about this? Does anyone else experience like me of being identified as having Aspergers, even though I don't technically meet the formal definition (I think)?

This is funny as I have often wondered if I had aspergers and even did a test I found on it online (a medical one though, not a 'quiz' one) and it said I was high on the aspergers scale.

Looking back at my childhood with my Mother and I had the behaviours then and she couldn't understand why I was acting that way. Social interaction has always been very difficult for me and I never know how to respond to people or what they want. I was always a solitary child too and preferred my own company and had complete obsessions over certain things/books/characters.
We saw a documentary about a little boy with it and it was like my childhood put onto the tv.

 

[wastwater]

Vaccination reactions happen and I wonder what it is about the individual that makes this so

 

[wastwater]

I seem to have a double regression,technically it should happen a lot more but most people don't have aspergers and ME/cfs

 

[lookinglass]

Vaccination reactions happen and I wonder what it is about the individual that makes this so

This is the whole key wastwater. Some children have the potential for disastrous life threatening reactions to some vaccinations. MMR in particular. We need to know why and how...

One size does NOT fit all....

 

[rosehearty]

I am happy to find some autism parents here. I have only recently come to realize I have CFS. I have had mini crashes (3-4 days every 2-3 months) for about a decade, but experienced a crash this September that has not abated and that finally led me to this forum and I am in the process of getting a diagnosis.

My son was diagnosed with regressive autism in 2000 at age 19 months. He is doing very well today such that autism is a very small part of our lives (he talks about "back when I had autism") but I have been having many "smack my head" moments now that I am investigating CFS.

I do believe there is a connection between CFS and autism, but I don't think we will see it in symptoms, instead by looking biochemically. When I started reading the forums I encountered "old friends" from the autism research and treatment world: Amy Yasko, Andy Cutler, Mady Hornig. So now I am delving into the biochemistry again, this time for myself. And since my son is doing so well (we did methylation support, chelation, etc. when he was younger but are not currently.) I am hopeful that these treatments will help me also.