With the rise of the Interwebs FDD is becoming more and more common. Fad Diagnosis Disorder involves the extraction of cash from the wallets of people who are suffering and, understandably, are looking for a fix.
Pick any disease—real or invented. (Real diseases have more potential for confusion because their existence can't be denied.)
Assign lots of symptoms to the disease.
Say that millions of undiagnosed people suffer from it.
Pick a few treatments. Including supplements will enable health food stores and chiropractors to get in on the action.
Promote your theories through books and talk shows.
Don't compete with other fad diseases. Say that yours predisposes people to the rest or vice versa.
Claim that the medical establishment, the drug companies, and the chemical industry are against you.
State that the medical profession is afraid of your competition or trying to protect its turf.
If challenged to prove your claims, say that you lack the money for research, that you are too busy getting sick people well, and that your clinical results speak for themselves.
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fbirder
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Well, it does all sound rather familiar, fbirder. So maybe I am.
In fact probably for most of the reasons above, my GP told me that B12 Deficiency was "Too Trendy" to treat and would not accept "finger prick blood tests from the Internet", has declined my offer of reading the two books as recommended on here " because they won`t have been written by real Doctors". Yet here I am, still hopeful of a cure.
It`s difficult to know which way to turn when you`re feeling ill , have multiple often vague symptoms and no one will take you seriously. Maybe it`s all in my head and they are right.
I have tried a few "Alternatives" in my time, I will admit. (Mainly stuff to alleviate arthritis pain but nothing worked) (Wanna buy a pair of used copper insoles?) I did try that American guy`s YouTube video the other day, but after two minutes my Woo-Radar went off, rightly or wrongly. You saved me the trouble of looking up his dubious credentials.
I know nice people who do Reiki. I know lovely people who swear by Homoepathy. (Hell, they even sell it in Boots !) Veterinarians peddle the stuff, and there`s nothing whatsoever in it... as far as I know. And acupuncture. And Chiropractors who always seem to tell you it`s because you got one leg longer than the other!
The placebo effect , especially when you`ve paid a shed load of cash for something large in a Box, is doing quite well even in these enlightened times.
Sometimes I do wonder if that`s all a really good Doctor relies on, one who listens and pretends to care. Haven`t had one of those in 20 years, and he hastily retired before he was struck off for fiddling the books. Ha ha.
I hope your post brings out some interesting replies. I`ll look fwd to the cut and thrust of the repartee.
Personally no but many others are... like my Mum. She has a cupboard full of supplements and whatever the latest superfood is, it is often bought. It is hard to have a bowl of yoghurt in my parent's house without having a layer of grit, sorry ground chia seeds, scattered across it. She loves assorted alternative therapies and has taken a number of courses in them, the latest was in homeopathy I think. Also don't mention the vile family christmas dinner we had during her gluten free phase a number of years ago. Trying to point out that some of these things are at best placebos, not appropriate for her, or at worst actually doing harm, often falls on deaf ears.
There is so much unscientific drivel out there masquerading as fact it is truly scary... and those who prey on them are ever scarier. I get that people who are ill want to do whatever it takes to feel well again, I really do, but I really wish people would properly look into the claims of some of these things before opening their wallets. It is just so hard not to grab onto something, anything, that may help and that sounds plausible when you feel rubbish.
The problem is that it is incredibly hard to separate the wheat from the chaff, especially if one of the choices is a website designed like a nice friendly, easy to understand, blog / site which, in language that sounds vaguely scientific, talks up the merits of X over Y. (Which of course just so happens to link to their shop selling X, or something to improve X). Sites that give a balanced view with scientifically referenced info are not necessarily so warm and fuzzy... or as well funded... or are constrained by a whole load more regulations.
Hitting Pubmed in search of actual scientific research for answers is not necessarily for everyone either! Unless you understand the scientific language (or are motivated enough to learn to decipher it!) it can be heavy going and there can still be conflicting theories as to what is going on, oh, and not all scientific papers are equal either!
In the mean time I keep trying (along with my Dad!) to give my Mum a more evidence based angle on things so she can make her own decisions. Will I agree with them all? Not a hope but at least I'm trying... and often learning myself in the meantime! She meanwhile is somewhat perplexed that she managed to give birth to a scientist!
When you go to a doctor with an illness and the doctor doesn't believe you are ill, what are people supposed to do?
There must be many thousands of people in the UK and the US who have low vitamin B12 which is not acknowledged by doctors. The symptoms they get with it are dismissed because their B12 is in range, and they are probably offered an SSRI (anti-depressant) and sent on their way, with the doctor hoping they won't come back again. Do you classify anti-depressants as Woo? Because I do, in most cases. They certainly don't fix the symptoms of a B12 deficiency. But for pharmaceutical companies they make an awful lot of money, so they have a glow of rectitude about them. Money has a tendency to do that.
In my view doctors are the biggest creators of customers for the alternative health purveyors. Blaming people who try to find their own cures for their problems, people who are not doctors, and who have no training in reading scientific research, is extremely unfair.
When you go to a doctor with an illness and the doctor doesn't believe you are ill, what are people supposed to do?
Go to a different doctor? I know that the correct answer isn't - 'Go see somebody who knows nothing about medicine yet can pay somebody to design a pretty web site'.
Are you saying that you might consider going to a naturopath just because they tell you that there is something wrong with you? And that they can cure you with their patented extract of dingo kidneys (but don't worry - it's fully vegan).
Do you classify anti-depressants as Woo? Because I do, in most cases. They certainly don't fix the symptoms of a B12 deficiency. But for pharmaceutical companies they make an awful lot of money
Do they? For a start - it's not the pharmaceutical companies that prescribe anti-depressants. Like antibiotics a lot of anti-depressants are prescribed because the patient goes in wanting it.
And I'd love to know how pharmaceutical companies are going to make so much money from something that costs the NHS 3p per tablet (that's the cost of fluoxetine - Prozac). That barely covers the cost of manufacture, let alone the millions they have to spend bribing doctors to prescribe them
Really? What about the pharma reps and their GP goody-bags? It's difficult to avoid tripping over them at the surgery.
I can't decide whether you are being blinkered and naive, or just disingenuous. Have you not worked for, or in service to, the pharmaceutical industry?
Really? What about the pharma reps and their GP goody-bags? It's difficult to avoid tripping over them at the surgery.
Yes, really. There are regulations concerning such actions. Here's an excerpt...
Regulation 300(1) of the Regulations provides that "a person may not, in
connection with the promotion of medicinal products to persons qualified to prescribe or supply them, supply, offer or promise to such persons any gift, pecuniary advantage or benefit unless it is- (a) inexpensive; and (b) relevant to the practice of medicine or pharmacy".
Have you not worked for, or in service to, the pharmaceutical industry?
Yes, and I make no secrets of the fact. It's why I know so much about the industry.
If it makes me more believable - I'm studying for a certificate in naturopathy.
Have you not worked for, or in service to, the pharmaceutical industry?I doubt it - anyone who works for a pharma company would know just how much revenue is generated by those medications. A relative of mine works for a big pharma company and explained at one point that the company was in a mild state of panic because the patents on one of the most popular antidepressants was expiring and they didn't have anything promising in the pipeline to replace it with (that could also be patented). The estimated lost revenue due to generics and price competition was a staggering amount. Just because some antidepressants cost a few cents now doesn't mean they didn't generate a ton of money during the lifetime of the patent. Not to mention that we don't see the actual cost of the medication - i.e. what the pharma company actually receives from the NHS or insurance companies for the medication.
Anyone who works for the pharma industry would also be familiar with their very aggressive marketing tactics. And it works.
Not to mention that we don't see the actual cost of the medication - i.e. what the pharma company actually receives from the NHS or insurance companies for the medication.
Yes we do.
The discussion started off by saying that SSRIs prescribed by doctors generate loads of cash fore the pharmaceutical industry. The most famous SSRI is Prozac. Now that it's off-patent doctors will prescribe generics (despite the trillions of pounds of bribes).
30 capsules of fluoxetine costs just over a quid. I know that because this information is made public - anybody can look it up.
Now it's cheaper - it used to be 3x that price when it was under patent protection. According to the interwebs, Lilly lost 70% of their sales when they lost the patent. Given that a patent lasts 20 years, that's still a lot of cash to be generated (of course they need to cover their R&D costs).
The point is that antidepressants are prescribed - generic or otherwise - instead of trying to find the root cause of the problem. If you can give 50 million people antidepressants (and cholesterol and BP medication) rather than thyroid medication which costs much less than a quid a day, I'd know which medication I'd be pushing if I was a pharma company. When I initially started having symptoms of thyroid and adrenal problems, my GPs first line of treatment was antidepressants. Thanks but no thanks!
I know that because this information is made public - anybody can look it up.
I didn't mean the price is hidden from the public, I just meant that we shouldn't discuss the price the consumer pays for the medication, but the actual cost.
There are regulations concerning such actions.
Yes there are ... doesn't mean that they follow them -
A patent lasts 20 years from the moment of discovery. Drug development takes half of that time wher the earnings are zero. And it's odds on that the drug candidate will fail before getting to market.
In my experience if one doctor doesn't believe you, then getting another one to believe you is harder still.
Are you saying that you might consider going to a naturopath just because they tell you that there is something wrong with you?
No, personally I wouldn't go to a naturopath. But I can understand why some desperate people do. Desperation makes people do lots of things they wouldn't even consider if they felt well.
Do they? For a start - it's not the pharmaceutical companies that prescribe anti-depressants. Like antibiotics a lot of anti-depressants are prescribed because the patient goes in wanting it.
Pharmaceutical companies don't make anti-depressants as a charitable act to the depressed women of the world. They make a profit. There are, no doubt, a lot of depressed people around. If you were suffering from pain which is denied, ignored, smirked at, you would be depressed too. The problem is that anti-depressants don't actually fix the cause of any pain.
I think a lot of functional medicine docs went to uni and studied either medicine or something biology related. They've probably spent more time studying than the average NHS GP. They certainly spent more time listening to patients. That's not say that some aren't useless, but so are many GPs.
I agree, humanbean. What are we to do? Take a course in every relevant subject to find out if it`s all rubbish or not? Certainly not with Brain Fog.
I do actually believe in the Leaky Gut Syndrome and it`s connection with Autoimmune conditions and Inflammation. Dr Art Ayres blog, Cooling Inflammation is along those lines and he`s a Biochemist and an advocate of increasing good gut bacteria by fermented foods.
At one time, the chap who discovered H.Pylori was ridiculed (Harrumph... a common bacteria producing stomach ulcers ....when Everyone knows it`s STRESS causing gastritis ?? ) and now it`s an accepted Thing they will test you for.
I think Doctors are just as hide-bound as everyone else, in fact believing themselves to be proved intelligent once, they think they know Everything ...forever. And they don`t need to look at their own guidelines even when you`re waving them in their faces.
Over the course of twelve years with our md, my husband got disabling muscle pain from the statins doc insisted he take. Doc missed the kidney stones resulting in er surgery. Doc missed the aneurysm-- discovered by the er physician. He missed the spot in the lung resulting in the loss of half a lung. He missed the blocked arteries resulting in triple bypass surgery. After two years with pee tubes hanging out of his back, my husband was scheduled to have the kidney removed when, in desperation, two weeks before the surgery, we saw an "alternative" health care physician. When my husband went in for the day before work up, his kidney issues were gone. The surgeon pulled the stents, removed the tubes and sent him home. This was about five years ago. (Chance piedra, if anyone has issues with stones).
The "alternative" we saw was recommended by our daughter (btw she' s a phd, and teaches anatomy, micro, and biology at the local college) who was saved from foot surgery by the md specialist who said it was her only choice. Turns out she had psoriatic arthritis--the regimen of diet, herbs, yoga didn't just fix her feet but virtually eliminated the disfiguring and miserably uncomfortable plaques she'd suffered with since puberty.
Despite the scoffing about the yasko therapy, my autistic grandson has made appreciable gains in the two years since we had his snps run.
Is there a pattern here? And that's just three family members. I think we have a congenital b12 issue. There are seven of us who have these symptoms. How many of the dozen or so mds we've seen in the last few years have agreed to either test or do a trial (it's a vitamin for god's sake!) ??? None. They have only themselves to blame for the proliferation of quacks out there. If you're going to research your health care providers (and a little investigation will go a long way towards eliminating the quacks), start with your md.
My husbands neuropathy has reached the crippling stage, the numbness and tingling in my fingertips is getting worse-- we don't have time to waste-- we've started injecting vet grade cyano. If anyone knows a source that will sell this vitamin without a scrip, hydroxy or methyl in an appreciable dose, please let me know.
Are you in the US? You may be able to import hydroxocobalamin ampoules from an Amazon.de Marketplace pharmacy - you'll have to ask the specific pharmacy whether they'll ship to you. In Germany it is legal to buy injectable B12 over the counter, and it is good quality stuff.
There is a translation function on Amazon's German site. If you get into difficulties, send me a PM and I'll talk you through it.
My teenage son lost a year of his life and education and was off school for 3 months because 7 separate NHS doctors (3 x A & E admissions) decided there was nothing wrong with him and it was all in his head . Do you know what that does to a 15 year old.
He was eventually treated for microcytic aneamia (finally picked up by a cardiologist), thyroid goitre has been brushed off as bloods within range.
He has responded well to mineral (balancing nothing to do with doctor)
He recently had tests because he has been tired again. B12 is 250 and GP suggests he has CFS.
As for leaky gut - I have healed mine all by myself with GAPS diet which works, healing my leaky gut has also cured my B12 deficiency and aneamia.
I also had my Mercury fillings replaced and I no longer have the horrible toxicity symptoms.
Vitamin D is pushed on us but Magnesium deficiency is never addressed- my magnesium red blood cells test shows I am severely deficient , the NHS don't even run this test!
I don't have any problem w scepticism, but who is drawing the line between snake oil and as-yet-unproven treatment? Is that line drawn by research alone or is there any anecdotal contribution to be made (which after all is how Viagra and Latisse both were repurposed after they proved ineffective for their initial intended use).
When I was on SSRIs in the 90s I had an nhs gp tell me they were new and expensive, had unknown effects on the body and no one even knew if they were addictive etc so she refused to renew my script. My last gp said they were no more effective than a placebo. So are they effectively no more than a sugar pill or are they a dangerous drug? Who has the last word on that?
Finally, I just want to say that there is a difference between scepticism and just plain being a know-all. My friend's RA flares when she eats wheat (identified after her rheumatologist advised an elimination diet). Trying to get lunch in a cafe in Bristol she was given the third degree about why she wanted gf bread ('Do you have coeliac disease?'). Everyone everywhere makes choices about their own health and those who are not involved sometimes make erroneous judgements when they should myob. Why not stand outside a church and interrogate the congregation on who has been making donations without proof of a god?
I think GPs are not perfect but they must have a heck of a hard job. They get something like 10 mins with a patient to try and work out what is wrong with them. The patient could have anything from the 1000s upon 1000s of diseases out there, a hefty chunk of which all have overlapping symptoms. Trying to weed out important (and relevant) clues from someone who is often speaking in non medical terms to try and make an educated guess as to what to even start testing has to be blooming difficult.
Yes some docs are arrogant *insert swear word of choice* and think they know best when, sadly, sometimes they clearly don't. They are just as human as the rest of us, and sadly miss things too.
Trying to find out what is wrong with someone while frequently having to steer the patient past half a ton of Woo that the patient has found on a dubious, non scientifically backed up websites during a google of their symptoms has got to be almost impossible at times. Add in an ever changing body of research about what the best treatment actually is and I'm not surprised some Docs miss things sometimes, when they perhaps should not.
I just wish PA had a definitive, and highly sensitive, low cost test and treatment that didn't involve life long injections. Heck I wish all diseases did...
I just wish PA had a definitive, and highly sensitive, low cost test and treatment that didn't involve life long injections. Heck I wish all diseases did...
Well, it used to have a pretty good test - the Schilling test was great for diagnosing an absorption problem (which, in those days, was assumed to be PA). Unfortunately it needs radioactive cobalt, which isn't made any more. If the government would pay a university to make it then we would have that test again.
Treatment is going to have to wait fore CRISPR to get fully up to steam. Oh, and for somebody to find the genes that switch our immune systems into overdrive. Once those two things happen it will be possible to edit the naughty genes into the nice versions.
Read up on CRISPR (various sources are available, depending on your ability to grasp molecular biology). It really could be the future of medicine.
Hey, Don't knock chiropractors. I was twice directed to hospital with crippling headaches ( on a scale of 1-10, they were off the scale) Examined by at least 6 different doctors. I gave the same description of the pain to each. None had any answers. Follow up by GP ( who didn't even touch me) resulted in a " different type of migraine" diagnosis. On friend's recommendation, and not expecting much, I went to see her chiropractor. It took her 30 seconds to find the bone sticking out of my neck ( which 7 drs failed to notice) and show me on the screen exactly where the pain had been in my head and why. (100% correct) Yes, cost me about £200 to get my neck/ spine rotation put right but combined with the exercises she showed me I was pain free.
I am very grateful indeed for the research of a man who originally qualified as a chiropractor, the late Dr John C Lowe. Without his pioneering diagnostic and treatment approach to hypothyroidism, I would still be on levothyroxine, and I would still be bedbound.
A recent investigation into pharma payments to Scottish health professionals, which I found through Lorraine Cleaver's connection with the hypothyroid community:
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So maybe I am.
She meanwhile is somewhat perplexed that she managed to give birth to a scientist! 
Support for our long suffering families 
From PA to CIPD - but a Big Thank You .. .
