Interesting news item in today's Sunday Times ...

It's behind a paywall so you can't access online. Sorry.

Apparently up to 40 families have been investigated by child protection officers because they disagreed with doctors about the diagnosis and treatment of children with myalgic encephalopathy (ME), also known as chronic fatigue syndrome, according to a leading paediatrician.

Nigel Speight, a paediatrician and adviser to The Tymes Trust (the Young ME Sufferers Trust) said "...Doctors are failing to diagnose ME, through neglect, ignorance or cold feet because it is controversial ..."

One mother, during a doctor's appointment, was told if they did not follow recommendations "then possibly it would go down the child protection route".

The article is pretty shocking especially as doctors have been going behind families' backs. Worth reading if you can.

[rosetrees]

cinnamongirl - any chance of copying and pasting and PMing it to me? Pretty please.

Without reading it, I can't be sure. But from what you said it sounds as if it reinforces what I often say now which is that ME charities have a vested interest in allowing ME to exist. They are as much to blame for blocking effective diagnosis and treatment as are many doctors.

[Hidden in reply to rosetrees]

rosetrees - I did wonder if I could try scanning it, will give it a go.

[rosetrees in reply to Hidden]

Pleeeeeeeaseeeee. (I was busy editing my previous comment and adding to it)

[Hidden in reply to rosetrees]

How do I post it up? Does it need to be hosted somewhere?

Thanks!

[rosetrees in reply to Hidden]

Several options.

1) I'll PM you my email address and I can upload it to my webspace

2) Upload it to photobucket or flickr and get the link

[Spareribs in reply to rosetrees]

or start a new thread - we all want to see it!

[rosetrees in reply to Spareribs]

Here they are

aboutmy.me/wp-content/uploa...

aboutmy.me/wp-content/uploa...

[Hidden in reply to rosetrees]

Thank you!

[rosetrees in reply to Hidden]

Believe me, you're very welcome. Thank you.

[Spareribs in reply to rosetrees]

still going on then... - dailymail.co.uk/news/articl...

I had a friend whose daughter was taken (luckily her Mum stepped in to help) her son also had "brittle bones" and was nearly taken too - she's a lovely gentle person, and didn't deserve this at all...

[Hidden in reply to Spareribs]

Sparerib - what an ordeal for your friend and her children but hope they're all safe now.

[Spareribs in reply to Hidden]

Yes all fine - daughter had a "big sister" for a mum

Son had lots of gentle cuddles - I must ask her if they found out what brittle bones actually was - I could guess with hindsight .....

[Hidden in reply to rosetrees]

That's shocking, how many ME charities are there?

[rosetrees in reply to Hidden]

Too many and they all have a vested interest (funding) in perpetuating ME. One major ME website even talks about adrenaline rushes being a feature of ME. Not even a suggestion that it is a classic symptom of hypoadrenalism and patients should order the saliva cortisol test.

No. Me charities want ME to exist and they don't want patients to find out what is really wrong and start recovering. Their funding would dry up.

[Hidden in reply to rosetrees]

That is so worrying and what are these poor parents supposed to do?

[rosetrees in reply to Hidden]

Children are having their lives ruined. They are left untreated and left to rot.

Spot the difference between thyroid/adrena/ME/CFS.

The answer lies in the dreaded "evidence based medicine" so beloved of modern doctors.

Got a thyroid problem? Evidence based medicine will tell the doctor whether you do or not - they'll do a test.

Got adrenal problems? "We don't do the right tests to get that all important evidence, so they don't exist."

Got ME/CFS? "Evidence based medicine, what's that. Never heard of it."

[sange]

sad so sad

[yorkshiregirl44]

Its all very interesting. I had been unwell a few years...all bloods normal so was diagnosed with ME, two weeks later bloods showed underactive thyroid and Haashimotos. I then went to a support group for ME and guess what all of the people i talked to at the support group also had thyroid problems.

Its a game to the medics to us its survival.

Christine

[rosetrees in reply to yorkshiregirl44]

If "Dr" Nigel Speight said one positive thing in that article it's "Doctors are failing to diagnose ME".

The more they continue to fail in this way, the more likely people are to get a proper diagnosis.

It makes me so wild I can't even begin to tell you. I wasted my whole life on this - I will do anything I can to stop others having their lives ruined in the same way.

[CarolineC57]

It's awful that this is still going on. I was diagnosed with ME way back in 1999, though I was ill for many years before that with the doctors telling me there was nothing wrong with me "take some iron tablets", "have some antidepressants/tranquilisers", etc). I even had one doctor tell me (when I was nagging him for some kind of diagnosis) that nothing could be done about ME so why did I want a diagnosis.

It was only when other unexplained symptoms appeared (hair loss, etc) that I did some further googling and came across the thyroid/adrenal link (thanks to ThyroidUK). Basically, I've lost several years of my life to all this!

Must be dreadful for parents with kids in this position though. Thank goodness I was an adult when I got really ill.

[rosetrees in reply to CarolineC57]

Caroline. Would you like to tell your story? I have a section on my website for patients' stories. If you would, PM me. Anonymous is fine.

[CarolineC57 in reply to rosetrees]

Hi Rosetrees - yes, I would! I'm a bit busy right now with work and things, but I'll PM you soon to talk about it. In fact, could you PM me a link to your website so I could take a look and see the kind of thing you're looking for?

[greygoose in reply to rosetrees]

Rosetrees, isn't CFS supposed to be the same thing as ME? If so, I Wonder if you would be interested in this :

Superb thyroid specialist Dr Hertoghe in Belgium needs our help. This is such an awful situation for a family in the UK and has echos of the treatment meted out to dear Dr Skinner. Please, if you have ever been dismissed as having CFS or somatoform with normal bloods but recovered with thyroid hormones or cortisone, write and support this family and Dr. I copy and paste the letter below. An email could change lives. I know many of us are still ill and still fighting for treatment but if you can, please do write. The sitation is so bad that soon there will be no doctors able to treat us.

facebook.com/thyroidpetitio...

Please have a look and see if you can help. I find this so shocking and frightening that I can't help going on about it. Somehting has to be done.

Hugs, Grey

[rosetrees in reply to greygoose]

Please. Don't anyone write until we have checked with the barrister that is really what is required. I know the lady in question. The initial hearing was today and the barrister is still en-route home.

[greygoose in reply to rosetrees]

OK So, you'll keep us informed?

[rosetrees in reply to greygoose]

When I can, yes.

[greygoose in reply to rosetrees]

ok

[Marz]

It is absolutely shocking. We have often mentioned on this forum that if basic testing was done at say 7 - 14 - 21 and so on then there would be a baseline for everyone and alarm bells would ring when something changed. I am thinking Thyroid - B12 - Ferritin - VitD etc. But hey that is Preventative Medicine - not a favoured model.....

Also nutrition - looking at many young people today we can see they are possibly lacking in the basics a balanced and junk free diet could bring.

Thank you for posting ....

[donna8077]

A family member by marriage was diagnosed with ME, she then was institutionalised for attempting suicide. It's just been confirmed that she actually has Lupus. She's just 16 years old.

It's all so very wrong!

[Dar68]

I was diagnosed with ME in 2002. Two years later my 14yr son was also diagnosed with ME and was unable to go to school for the last two years.

One morning we received a letter from the doctor,my son had seen at the hospital,to say he thought my son was well enough to go to school. We then received a phone call from the education welfare officer informing use that unless my son was sent to school we would receive a visit from them.

I was so angry because my son could not even get out of bed and slept most of the day. I rang the hospital to speak to the doctor and was told he was on his rounds. I chased him up and told him what I thought. He apologised for not realising that my son was so ill and put me in touch with a lovely lady in charge of the hospital education.

My son had 2 tutors who taught him at home 3 times a week and his exams were also taken at home.

I was not well myself at the time but like most parents you want the best for your child. How dare they do this to parents it's shocking.

Angela X

[rosetrees in reply to Dar68]

Angela. Have you both had full thyroid panel, (TSH, FT4, FT3, antibodies), iron, folate, ferritin, B12, D and then cortisol saliva test?

It is so wrong that children are left undiagnosed. Find out what is wrong with both of you and start getting the treatment you both need and deserve.

[Dar68 in reply to rosetrees]

Hi rosetrees

I was diagnosed hypo earlier this year. I recently had a private blood test which revealed Tg antibodies. I am reading as much about hypo as I can and I am in the process of sorting all my vitamins out.

My son has just had all the tests done and they have come back normal. His TSH was 1.26 (0.35-5.50). He has agreed to having private bloods done and I would like him to have a cortisol test too.

My daughter also has a rising TSH 3.75 (0.27-4.2)

As a person who has been diagnosed with ME and as a parent who has had to watch a child suffer with it, I think I have the right to say I am questioning the diagnosis of ME without offending anyone.

As a parent I feel guilty that I did not question the diagnosis earlier and research more.

I must fill in my profile, I keep putting it off.

Sorry for rambling on I feel very strongly about the article.

Thank You

Angela X

[archipoeta53]

What nobody apart from the scientists say is that Wifi, aka low-frequency pulsed radiation, is dangerous, particularly for young children, who are often exposed to it 24/7. Published, peer reviewed research has demonstrated that it diminishes thyroid hormones, seretonin and melatonin, distrupts sleep, destroys sperm and causes cancer cells to divide more quickly. Harvard Medical School is on record as saying there is a "strong possibility" that it is linked with autism. Lloyds stopped insuring the telephone companies against health claims in 1999. They stopped insuring the asbestos companies in 1913. They read the scientific press.

Keep yours on all the time? Turn it off at nights, and consider using a cable instead. Your thyroid will thank you.

Don't believe me? justproveit.net for a list of the published scientific studies arranged by illness.