Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back...

[Kitten1978]

Have you heard of PACE approach to treating CFS and ME?

statnews.com/2016/09/21/chr...

[Mikegov]

Thanks for the link - very interesting read. Reassuring that people still have the gumption and stamina to fight the medical establishment

[humanbean]

I've read quite a lot on the Phoenix Rising forum, and they are many times worse off than most people with thyroid difficulties. They get no treatment at all. Once you've been diagnosed with ME/CFS you are effectively denied treatment for everything. This is done on the basis that doctors think people with the condition are shirkers, malingerers, attention-seekers, people who want to be ill etc and the sufferers are classed as mentally ill.

I find this all very odd. People with bipolar disorder or schizophrenia or psychosis or loads of other conditions are described as mentally ill, but doctors don't deny them treatment as a result, and don't hate the patients.

Yesterday the results of a trial called the SMILE trial were announced. It got a mention on the BBC and on various online news sites.

bbc.co.uk/news/health-41336384

It involved treating adolescents with ME/CFS with a "treatment" called the Lightning Process (LP). It turns out that the Lightning Process is basically based on magic, brainwashing, coercion and making the kids tell themselves lies and tell other people lies. You must never tell people you have ME for example, and you must always say you feel well, no matter how bad you feel. And it is riddled with patient-blaming too.

I got this quote from the PR forum :

The Lightning Process is:

Believe the Lightning Process will cure you.

Tell everyone you are cured.

Stand on paper circles with some key words written on them.

Learn to say a rhyme when you feel symptoms, no matter where you are, and as many times as it takes to make the symptoms just go away!

Speak in positive words and think with positive thoughts only.

Shout "Stop!" at every symptom.

You are responsible and choose to have M.E. - you must choose a life you love.

If the process is not working, you are not doing it right.

And the worrying thing for us on this forum is that LP is proclaimed to be a good treatment for hypothyroidism and hyperthyroidism and many other conditions that often occur along with thyroid problems.

People using the Lightning Process® have also recovered from, or experienced significant improvement with the following conditions: –

Fibromyalgia

Chronic Fatigue Syndrome

Post Viral Fatigue

Asthma

Rheumatoid Arthritis

Hayfever

Depression

Dyspraxia

Bipolar Disorder

Ocd

Anxiety And Panic Attacks

Insomnia

Cerebral Palsy

Low Self Esteem

Parkinsons Tremors

Motor Neurone Disease

Hyper And Hypo Thyroidism

Chronic Aches And Pains

Ibs

Lyme Disease

Anger Issues

Food Intolerances

Coeliac Disease

Ptsd

Candida

Allergies

Type 2 Diabetes

Interstitial Cystitis

Migraines

Noise And Light Sensitivity

And Many More

Using the Lightning Process® has proven effective for clearing ALL the debilitating physical and mind based symptoms of ME, chronic fatigue syndrome, and post viral syndrome.

Some of the symptoms that people have cleared are listed here…

Addictions, adrenal problems, allergies and intolerances, anxiety, balance problems, bloating, blurry vision, brain fog, candida, chemical sensitivity, compulsive behaviours, concentration problems, confusion, constipation, depression, diarrhoea, dizziness, electrical pulsing sensations, excessive sleeping, exhaustion, fatigue, fear, feeling detached or disconnected, fever and chills, flu-like symptoms, frequent coughs and colds, fybromyalgia, hallucinations, head pain or pressure, heartburn, indigestion, insomnia and other sleep disturbances, irritability, irritable bowel syndrome, itching and rashes, itchy eyes, joint pain, light sensitivity, loss of vision, malaise, memory loss, migraines, muscle pain, nausea, noise sensitivity, oedema, panic attacks, painful and/or swollen glands, pins and needles, restless leg syndrome, runny nose, sensitivity to electrical fields/computers/mobiles etc, shaking, shooting pains, skin sensitivity, stomach pain, sun burn sensation, swelling, temperature control problems, thrush, thyroid problems, unrefreshing sleep, vertigo and similar sensations, vomiting, water retention, watering eyes, weakness…"

[greygoose in reply to humanbean]

That is outrageous! As you said, magic, brainwashing, coercion - snake oil, without the oil! Witchcraft and patient-blaming at its worst. How dare the call themselves doctors! I'm sure there are plenty of other words that would describe them more accurately.

[Angel_of_the_North in reply to greygoose]

Magic would probably be more effective as the old wise woman would probably have a few herbal remedies up her sleeve as well.

[greygoose in reply to Angel_of_the_North]

Very true!

[Kitten1978 in reply to Angel_of_the_North]

Good point!

[greygoose in reply to greygoose]

And, after reading the testimonials, I would add bullying to that list!

[Kitten1978 in reply to humanbean]

OMG!!!! This is no different than going to see a village witch!!! It's like "energy healing" glorified: wicca-spirituality.com/ener...

I do wonder how many CFF sufferers actually have undiagnosed (wrong TSH norms) or untreated hypothyrodism...or other metabolic disorders.

[Lilackeith in reply to Kitten1978]

I was diagnosed with CFS and the treatment was all therapy based which did not work. Eventually i went to a private endocrinologist and was prescribed Armour and Vitamin D and the symptoms disappeared. The GP and COS service just didn't listen! I imagine there are many others in the same position.

[Kitten1978 in reply to Lilackeith]

When you think that so many people are vit D deficient in the UK...

[Hidden in reply to humanbean]

Dear God, just when you think things can't get any worse...

I...I... am speechless......

[SmallBlueThing in reply to humanbean]

Prior generations of my family have died earlier than they need, thanks to their adherence to "Christian Science" (faith healing) and NHS cock-ups.

Not related to me, but relevant to this community, is this case of a hypothyroid woman who died at the age of 54, due to avoiding treatment: ncbi.nlm.nih.gov/pubmed/372...

Her TSH, measured after her death, was only 17.9.

When I was a teen, the doctor mother of a friend let me know in no uncertain terms that medicine was the concern of medics. Would that we could trust them all!

[Kitten1978 in reply to SmallBlueThing]

So they blamed the patient as she never sought medical care for her hypothyridism. We know that there are people in this community who sought medical care and still almost died because medics failed to diagnosed them with hypo (their TSH was too low) or because they couldn't tolerate levo. I bet there are people out there who cannot take levo and are deemed "uncompliant" with levo treatment and therefore left to die...

[Spareribs in reply to humanbean]

I refused a diagnosis of CFS/ME, my GP said "it's a good diagnosis to have"...

However a colleague was diagnosed ME (after various tests) & told to pace things etc. he died last summer, bone cancer

My point being - it's a 'bucket diagnosis' when they just don't know and very dangerous.

I note NHS choices now list to check underactive thryoid - but as we know the TSH test isn't right, the range too wide & folk often have their non-fasting tests in the afternoon.

I will read the article now.... x

[humanbean in reply to Spareribs]

I refused a diagnosis of CFS/ME, my GP said "it's a good diagnosis to have"...

It's a good diagnosis for the GP. It means they can stop helping that patient other than getting some exercise for their waffling muscles, every time they fob the patient off.

[Spareribs in reply to humanbean]

exactly - disgusting!

[Kitten1978 in reply to Spareribs]

TSH test in the afternoon was a big problem for me...I didn't know then I had to do it early in the morning. I had the right to be unaware of this - I was a patient. There is no excuse for the fact that my GP and the stupid endo, I was referred to, weren't aware of this either!!! If your TSH gets tested in the afternoon you have approx 50% chances of being undiagnosed, in spite of suffering from multiple symptoms..

[savery8753]

Hi

Thank you for sending me that link, I have had a read through, trying to take everything in. So , my guess is that I go seem him, tell him my journey and let him tell me I have chronic fatigue. BTW, the whole family suffer with thryoid problems. My symptoms went throught the roof after having me son. It wasnt until I had a stroke, that a slightly high tsh landed me in the arms of an incompitant endo who treated me for overactive thyroid.

Needless to say I never got better thyroid wise and managed to find Dr S who brought me back from the dead.

May I ask you lovely people who you see now? Any reccomedations are truley grateful.

Ive had to get an estate agent round this week to sell my family home to fund my health. Needless to say, Im feeling robbed of my life .

Thanks again

C

[Marz in reply to savery8753]

Do you know if you have raised Homocysteine ? A marker for stroke and if high also indicates B12 deficiency at a cellular level .... along with the MMA test.

[Kitten1978 in reply to savery8753]

If you contact Thyroid UK they will email you a list of recommended endos...I'm sorry for what you have been through...;(

[humanbean in reply to savery8753]

I would move Heaven and Earth to avoid a CFS diagnosis. Once that happens people truly are on their own.

[humanbean]

I mentioned the Lightning Process above - well here are some reviews of it from people who undertook it :

sayer.abel.co.uk/MESNORFOLK...

[greygoose in reply to humanbean]

Why isn't this illegal? It certainly should be!

[Kitten1978 in reply to humanbean]

Thank you for sharing this website!

[Angel_of_the_North]

One of my clients was treated with that and ended up with a twisted gut - which of course wasn't real pain, as she was brain-washed into thinking - and she died.

[Kitten1978 in reply to Angel_of_the_North]

I'm speechless .....;(

[Angel_of_the_North in reply to Kitten1978]

By the time they got her into hospital for an operastion it was really too late and she never recovered after the surgery. What was worse was that this was the second gut operation she'd had to have - yet they still told her that her pain wasn't real! And she'd had to have an iron infusion and B12 injections - but it was all in her mind

[Kitten1978 in reply to Angel_of_the_North]

It's difficult to imagine a worse way to die - it must have been very painful Poor woman. I'm so sorry...;(

[helbell]

Wow!!

[helbell in reply to helbell]

This applies to so many of us that have crawled through the massive indignities and injustices of misdiagnoses...or, rather, not looking the hidden thyroid disease cause of CFS. We are offered the same treatment ...if we're lucky, insults if not, and the psychosomatic diagnosis sticks like the proverbial.

[Kitten1978 in reply to helbell]

Very well said....

[Marz]

Of course the connection with the thyroid is not made due to inadequate testing and the inability to interpret the results - as seen on this forum daily 😊

[savery8753]

Hi All

Thank you for all your comments, very interesting.

I know the chronic fatigue route is not my answer, just going along with the nhs flow at the moment.

Ive massively deterioated over the past few months, put on 1 1/2 stoe sice September, Appetite non existent. can barely walk. Im dragging my legs round the house, crawling up the stairs, holding onto the walls and kitchen side to get about.

I dont look like me, I look quite scarey.

I guess my body is completely empty of the levo, my question is, would this be the right time to start NDT? sorry am I allowed to aask these questions? Im struggling today, should I restart the natural adrenal support.

Ive ordered the tests for iron ferritin, B12 useless I know, Vitamin D bla blah blah (in Feb my level was 40, increased to 86 in the summer without supplementing.

Not expecting the CFS Specialist to agree with anything I have done over the years BUT I forgot to mention that l have what looks like a Lyme rash on my hand which has been there for 18 months and betting bigger by the day,

I would really appreciate any advice, again sorry if Im not allowed to ask these things.

C x

[Kitten1978 in reply to savery8753]

savery8753 ,

This forum is here to help BUT you would be better off if you write a separate post, so that your questions get noticed, and describe your situation there. This should include:

- your diagnosis: are you hypothyroid?

- your last TSH, and FT3, FT4 if you have them

- are you on any medication (levothoxine? - are you still taking it?)

- have you had any adrenal tests done?

- your iron, ferrtin (or TIBC), vit D3 and B12 tests?

[savery8753 in reply to Kitten1978]

Kitten1978

Yes, I am hypothyroid, diagnosed by Dr S then seeing a private GP who was happy to keep giving me Levo.

Im not taking anything at the moment because I cant afford the appointments and medication etc.

I am saving every spare penny ossible, hoping to be able to book bloods very soon. My NHS gp refuses to do any bloods and puts his hands over his ears saying la la la la to drown my voice .

I will post everything very soon, for now you're all giving me hope