CFS is Heart Failure- to quack or not to quack

[brodski]

My partner suffers from chronic fatigue syndrome/ me, which is a diseases surrounded by woo. I often have a very hard time extracting the useful information from the useless.I would like to get the opinions of the well informed types here on the latest article I have been forwarded on a possible "cure"http://www.drmyhill.co.uk/article.cfm?id=373I am tempted to call "quack" as a couple of things don't ring true.

Implications for treatment: the detailsIf the body is functioning normally and has access to all essential minerals, vitamins, essential fatty acids and amino acids, it can make all these essential ingredients, in particular co-enzyme Q 10, acetyl L-carnitine and D-ribose. Magnesium must be supplied. This explains why most patients get well on my standard work up of treatment because this supplies all the essential ingredients for the body to heal itself. However, for those who do not get well, it is likely that there is some sort of metabolic defect which prevents them from manufacturing these essential ingredients. I call this metabolic dyslexia! It may well be that genetically poor mitochondrial function alone is the problem, or there may be toxins or pesticides stuck in the system which stop the mitochondria functioning properly. It may well be that once the patient has dropped below a certain critical level, all cellular processes are going so slow that the sufferer is unable to manufacture the very things required to restore health. With age, our metabolism becomes less efficient anyway and we may need more raw materials in order to maintain the status quo.

 

[Asolepius]

The clue is in the words `it may well be...'. I'm not a biochemist, and possibly all the preamble is plausible, but as we all know it comes down to the evidence. What clinical studies have been published on this treatment? CFS is not heart failure however, and if this person says it is then I would be very wary of what they say.

 

[Asolepius]

I just scanned the article you found, and was quite impressed with the quality of it until near the end when `detox' appeared. The only supporting reference for the practices advocated is a book, and of course anybody can write anything they like in a book. There should be peer-reviewed publications if we are to take all this seriously.

So who is Dr Sarah Myhill? There is nobody registered to practice medicine in the UK under that name. What's all this about `20 years in the NHS and private practice'? Why not write to her and ask?

 

[Mojo]

So who is Dr Sarah Myhill? There is nobody registered to practice medicine in the UK under that name. What's all this about `20 years in the NHS and private practice'? Why not write to her and ask?

She's listed in the 2004 Medical Register (I don't have access to the 2005 edition): Registration number 2734668, full registration 12th August 1982.

 

[aggle-rithm]

The excerpt mentions "genetically poor mitochondrial function". Mitochondria genes are inherited whole from the mother, so there aren't any of the normal problems with recessive genes popping up unexpectedly. If your mitochondria are defective, then so is that of all your siblings, and your mother, and all her siblings, and her mother, etc. It seems like something that would be selected out pretty quickly from the gene pool.

 

[brodski]

The excerpt mentions "genetically poor mitochondrial function". Mitochondria genes are inherited whole from the mother, so there aren't any of the normal problems with recessive genes popping up unexpectedly. If your mitochondria are defective, then so is that of all your siblings, and your mother, and all her siblings, and her mother, etc. It seems like something that would be selected out pretty quickly from the gene pool.

I take it then that the fact that my partner sufers from CFS, yet her twin sister dosn't, would indicate that her CFS couldn't be casued by faulty mitochondria genes? Oh and thanks to everyone for the quick responces.

 

[Hellbound]

The excerpt mentions "genetically poor mitochondrial function". Mitochondria genes are inherited whole from the mother, so there aren't any of the normal problems with recessive genes popping up unexpectedly. If your mitochondria are defective, then so is that of all your siblings, and your mother, and all her siblings, and her mother, etc. It seems like something that would be selected out pretty quickly from the gene pool.

Just to play devil's advocate for a moment, isn't there a possibility of flaws in cellular DNA that affect the proteins, enzymes, etc, that interface with the mitochondria?

In other words, couldn't there be a problem with the way the body transports the raw materials to the mitochondria, or picks up the processed energy from them? That could still be technically described as "genetically poor mitochondrial function", even if it is a bit misleading.

 

[casebro]

The excerpt mentions "genetically poor mitochondrial function". Mitochondria genes are inherited whole from the mother, so there aren't any of the normal problems with recessive genes popping up unexpectedly. If your mitochondria are defective, then so is that of all your siblings, and your mother, and all her siblings, and her mother, etc. It seems like something that would be selected out pretty quickly from the gene pool.

A couple points on mitochondrial disease: Yes, they come from the mother. But, every mother has some defective mitos in her egg. As the egg divides and multiplies, the bad ones may be partitioned off into one of the subesequent cells. It takes about 15% bad ones to cause grief. Whatever that cell grows into can have problems with energy production. Poor energy in muscles cause strength problems, in brains cause mental problems, in pancreas causes dibetes or digestive disorders. AND, the mitochondrial genes lack the repair/double check facility of nuclear genes, so everybodys mitochondria get worse with age. LOTS of diseases seem to have a mito connection, including baldness, Diabets, Parkinsons, heart disease, hypertension, tendinopathy, myopathy. I have all of those. In fact, I was diagnosed with Fibromyalgia by one quack, before I talked another doctor into a muscle biopsy that showed ragged red fibers. Have you ever "worked so hard you've pee'd blood?" It ain't blood, it's dead muscles cells, because they ran out of energy and died. It can wreck kidneys.

One study done in Japan showed mitochondrial genetic defects in 17% of adult onset diabetics. Japanese genes, but Japanese diet too....

Newest advice (from a UCSD researcher) is to take Magnesium Orotate. Seems the orotate escorts the magnesium clear through the system and into the mitochondria. I've been taking it for a year, and seem a few percent better. My gums don't bleed when brushing, my nails are harder, my hair is longer- but I still have a "high forehead". And poor exercise tolerance. And I'll still need another couple of trigger finger releases done.

Anyway, there is some truth in the OP's link...up to the detox thing. I think "detox" is as big of a give away of quackery as "quantum mechanics" is in Paranormal stuff.

 

[Camillus]

The excerpt mentions "genetically poor mitochondrial function". Mitochondria genes are inherited whole from the mother, so there aren't any of the normal problems with recessive genes popping up unexpectedly. If your mitochondria are defective, then so is that of all your siblings, and your mother, and all her siblings, and her mother, etc. It seems like something that would be selected out pretty quickly from the gene pool.

Not true. The mitochondria only hold the genes needed for 13 proteins within the mtDNA. The other 1000 or so proteins needed are coded from the nuclear DNA and imported into the mitochondria.

Autosomal recessive inheritance and disorders directly linked to mutations in the maternal mtDNA are the most common cause of mitochondrial related disease.

There are also a number of diseases that are X-linked so the picture for what cause mitochondrial diseases is complex.

We also know that some people are vulnerable to environmental factors that can trigger mitochondrial disease. Almost certainly this is tied to a genetic component. The best known of these is the fact that some anti-retroviral drugs cause damage to the mitochondria causing a drop in energy levels. The damage resolves when the patient stops taking the drug.

I'm aware of 40 or so mitochondrial disorders, some of which cause varying degrees of myopathy. Most however are pretty nasty, causing seizures, cardiac problems and growth defects.

Unfortunately I don't know enough to be able to comment on whether CHF could be a low-level mitochondrial disorder.

 

[blutoski]

My partner suffers from chronic fatigue syndrome/ me, which is a diseases surrounded by woo. I often have a very hard time extracting the useful information from the useless.I would like to get the opinions of the well informed types here on the latest article I have been forwarded on a possible "cure" dubya-dubya-dubya.drmyhill.co.uk/article.cfm?id=373I am tempted to call "quack" as a couple of things don't ring true.

I'm not sure why you were forwarded this one cure. Dr. Myhill has many theories for what causes CFS, and this is only one of them. The condition's aetiology is not known, so all medical advice is practice by hypothesis.

See Myhill's own subject page for this:
dubya-dubya-dubya.drmyhill.co.uk/articles.cfm?subject=Fatigue

She speculates sometimes it's vitamin or mineral deficiency, sometimes it's viral infection, sometimes it's mitochondrial problems... these are all her personal theories, and she provides no evidence to support them, at least not on the website. I haven't read her book. Perhaps she includes citations there.

 

[brodski]

I'm not sure why you were forwarded this one cure. Dr. Myhill has many theories for what causes CFS, and this is only one of them. The condition's aetiology is not known, so all medical advice is practice by hypothesis..

I get forwarded all sorts of CFS "cure" stuff, most of which I can spot as quackery a mile off, the person forwarding it to me is "amazed by the results" she had got from using this treatment. CFS is poorly understood by medicine, and so its a real woo magnet

..[/quote]
See Myhill's own subject page for this:
dubya-dubya-dubya.drmyhill.co.uk/articles.cfm?subject=Fatigue

She speculates sometimes it's vitamin or mineral deficiency, sometimes it's viral infection, sometimes it's mitochondrial problems... these are all her personal theories, and she provides no evidence to support them, at least not on the website. I haven't read her book. Perhaps she includes citations there.[/quote]

I am trying to find out if any of her wild speculations have any evidence to support them, or if she is just quacking along to the same tune as so many other CFS websites.

 

[SteveGrenard]

My partner suffers from chronic fatigue syndrome/ me, which is a diseases surrounded by woo. I often have a very hard time extracting the useful information from the useless.I would like to get the opinions of the well informed types here on the latest article I have been forwarded on a possible "cure"http://www.drmyhill.co.uk/article.cfm?id=373I am tempted to call "quack" as a couple of things don't ring true.

Your partner should do two things: get tested for an underactive thyroid (TSH, T3, T4)and if that's okay, then go for an overnight sleep study. Excessive daytime sleepiness/fatigue may be a symptom of obstructive sleep apnea and hypopnea syndrome as well as hypothyroidism.
It's also possible she may have both.

Since you didn't mention she had these tests, they are strongly suggested before starting to look for more exotic causes. Sleep apnea can also lead to congestive heart failure, treating it can prevent CHF.

 

[brodski]

Your partner should do two things: get tested for an underactive thyroid (TSH, T3, T4)and if that's okay, then go for a sleep study. Excessive daytime sleepiness may be a symptom of obstructive sleep apnea and hypopnea syndrome as well as hypothyroidism.

Carly has been Ill for nigh on two years,he has been tested for everything from an under active thyroid to myasthenia gravis. she has finally had a diagnosis of chronic fatigue syndrome (which is a diagnosis of exclusion usually).

So she is left with a diagnosis of a poorly understood condition, which may or may not even by a physical disease (but you get shouted down by most ME/CFS sufferers you mention that to). Unfortunately (and ironically given the nature of the article I liked to) the CFS specialist she has finally been referd to has just had a heart attack, and so her referral has been push back even further, .

In the meantime we are stuck with the world and his wife trying to push all manner of "cruse" on us, the list of "causes" for CFS these people put out is immense, from excess Candida, to vaccination, to food additives.
And as for the "cures" themselves...

 

[Deetee]

I'm not sure why you were forwarded this one cure. Dr. Myhill has many theories for what causes CFS, and this is only one of them. The condition's aetiology is not known, so all medical advice is practice by hypothesis.

See Myhill's own subject page for this:
dubya-dubya-dubya.drmyhill.co.uk/articles.cfm?subject=Fatigue

She speculates sometimes it's vitamin or mineral deficiency, sometimes it's viral infection, sometimes it's mitochondrial problems... these are all her personal theories, and she provides no evidence to support them, at least not on the website. I haven't read her book. Perhaps she includes citations there.

I checked her web page.
It contains statments like:

"I think the evidence that the MMR vaccine causing autism is strong"

"A vaccination will never produce the same strength of immunity as getting the real infection. My worries are: The insidious erosion of the immune system "

"a combination of high mercury load and poor detoxification could result in mercury being dumped in the brain to create the symptoms of autism. "

"MMR vaccination, or more specifically the measles component of it, may be a problem because the measles vaccine is live, the virus gets into the immune system around the gut and therefore makes the gut more leaky. This has been amply demonstrated by Andrew Wakefield who has been vilified by the Establishment as a result. "

"Mercury is one of the most toxic minerals [sic] known to man. It readily leaches from dental amalgam fillings as mercury vapour, which is inhaled, absorbed into the blood stream and deposited round the body including in the brain."

"I am a Multiple Chemical Sensitivity (MCS) sufferer."

These statements (and there are plenty others) make me go "hang on a bit, what's the agenda here..?" The words salt and pinch would spring to mind if I were considering anything she claimed to be factual.

ETA in the "how to treat infection" section:

Infections can also be helped by propolis 600mgs three times daily (dissolve in the mouth). Fresh propolis is cheapest from a bee keeper - it comes as a firm waxy lump - just break off a pea sized lump and suck/chew. Echinacea 200mgs - to be taken at the first sign of a cold in small doses every 2-3 hours for the duration of the infection. Lime blossom tea - several cups daily. Sage works as a gargle for sore throats/tonsillitis (needs large doses e.g. 30 drops of the fluid extract in water, three times daily), as does hydrogen peroxide (food grade 6% available from Boots)- gargle 4 times daily. Try chamomile tea.
One of my patients claims 1,000mcgms of selenium daily works wonders. The toxic dose is 3,000mcgms daily. All these preparations are available from BioCare 0121 433 3727. All my patients qualify for trade prices.

The only surprise is that she only flogs tests (£50 a time) and not the cures as well.
You have been warned.

 

[blutoski]

(quoting dr. myhill)

"I am a Multiple Chemical Sensitivity (MCS) sufferer."

Ah, yes. While CFS is a diagnosis of exclusion, and documented in much medical literature as plausible, MCS is sheer quackery.

I did a writeup on this a few years ago:

http://www.graemekennedy.name/skepticism/iei.html

 

[brodski]

I checked her web page.

These statements (and there are plenty others) make me go "hang on a bit, what's the agenda here..?" The words salt and pinch would spring to mind if I were considering anything she claimed to be factual.

.

yeah, it was stuff like that which made me post it up here in the first place, I looks like my suspicions have been confirmed. however At the moment, we're desperate enough to investigate any possible cure, (until it comes to spending money on it, we'll wait for a proved effective treatment for that, unless it is covered by the NHS, or our basic private insurance).

Unfortunately many people in the CFS community don't rely on a skeptical approach to medicine. can understand perfectly why. CFS is a nasty life destroying condition, seeing the woman you love in pain every day, and at times being so tired she can barley string a sentence together is soul destroying, and there is little that medicine can currently do to help, so there is an immense feeling of helplessness, which vampyric woos feed on.

When you consider that a lot of CFS/ME suffers are on benefits, the immorality of these quacks is highlighted even more. the number of times I have heard people complain that their benefits payments are barely enough to pay their homeopath!
sorry, rant over.

 

[ysabella]

So, she was tested for hypothyroid - but what were her test results? Hypothyroidism is arguably an undertreated problem. I was told mine was normal for years and years when my TSH was over 3 (it's higher when your thyroid is lower), because it was still within lab range (0.5-5.5). But nowadays most endocrinologists think it should be under 2, and now that I'm taking pills for it, I know I want mine kept under 2.

 

[LordoftheLeftHand]

brodski

I know you said that she has had every test imaginable but you never specifically said that she had been to a sleep clinic. Has she been to a sleep clinic? I suppose that since it was discovered that I have a sleeping condition, it is natural to assume that anyone with a health problem has a sleeping condition. But the symptoms of CFS sound a lot like the symptoms of sleep apnea.

I hope you find a solution soon,
LLH

*edited formatting

 

[brodski]

So, she was tested for hypothyroid - but what were her test results? Hypothyroidism is arguably an undertreated problem. I was told mine was normal for years and years when my TSH was over 3 (it's higher when your thyroid is lower), because it was still within lab range (0.5-5.5). But nowadays most endocrinologists think it should be under 2, and now that I'm taking pills for it, I know I want mine kept under 2.

I don't have the exact test results to hand (the tests where conducted over the past two years), but every time she has been refered to a new specialist, the thyroid is the first thing that is tested, and it always comes back normal. A consultant rheumatologist we where referred too though that he was on to something when he discovered that Carly's mum surfed from hyper-parathyroidism, but no, normal, completely normal.
Also thyroid dysfunction would not explain all of the symptoms of her CFS.

 

[brodski]

brodski

I know you said that she has had every test imaginable but you never specifically said that she had been to a sleep clinic. Has she been to a sleep clinic? I suppose that since it was discovered that I have a sleeping condition, it is natural to assume that anyone with a health problem has a sleeping condition. But the symptoms of CFS sound a lot like the symptoms of sleep apnea.

Carly's problems with CFS started before her sleep was disrupted, it originally presented as "chronic pain syndrome", intense muscle and joint aches, but the main feature of CFS is that she is tired, regardless of the rest she has, whether that's sleeping or awake. She can spend whole days asleep, and feel temporarily rested, but walking 100 yards is still beyond her (unless she is having a good day, which seeming occur at random)- and that just ain't right for a 24 year old. Once we actually get so see the CFS specialist I will bring up sleep disorders with him- like I said, we'll give anything a shot as long as it dosn't cost anything, or is more liley to harm than help.

I hope you find a solution soon,
LLH

thanks, though I doubt there will be any quick answers, manegemnt and "pacing" seem to be the way to go.