Thyroid UK
84,126 members99,104 posts

CFS/ME - Anyone with thyroid issues also suffer with?

CFS/ME - Anyone with thyroid issues also suffer with?

Is there anyone on here suffering from Chronic Fatigue Syndrome or from ME?

If so, you will likely find this of great interest - please digest and consider if you would like to use this method of complaint. Be happy that someone is batting for someone :-)

Also, there is much in here for someone, SOMEWHERE, to consider a not dissimilar 'complaint' re the appalling treatment of so many of us hypothyroidees and beyond :-)

drmyhill.co.uk/wiki/My_Comp...

26 Replies
oldestnewest

Thanks for posting and many know of Dr Myhill's good work and not succumbing to difficulties she's faced with the authorities.

3 likes
Reply

As the most prosecuted by the GMC UK doctor (for helping get people well!), I am delighted that she has done this.

All we need now is a hypothyroid advocate to follow suit.

5 likes
Reply

Thank you for the post. Incompetent doctors including consultants tend to push patients into this category (CFS) when they are unable to diagnose accurately a condition, especially when patients have multiple complex physical issues. It's a way of getting rid of such patients rather than trying to find the cause (ie: mitochondrial dysfunction, viral disease and immunity problems, etc.). So there is little hope to get support and real help in getting better.

3 likes
Reply

JGBH, that is absolutely the case. Rather than run different tests, they either restrict people to some hopeless range or ignore... sadly, there is so little support out there, especially when - as you say - there are multiple issues, obscuring one on top of the other BUT that should not deter any doctor. Take care and be well. :-) xox

1 like
Reply

LindaC, I am absolutely fed up and despair... We simply must not let this poor service and carelessness push us in an obscure corner where nothing will really help whilst our health keeps on deteriorating. How can we start turning this situation around? Is it possible? Take care too. xx

2 likes
Reply

I know JGBH, just when I get some renewed gumption about me to sort out all of the papers etc, just to take to someone who can/will, I get that spurt to try to just catch up with a little life... then I'm back on my knees again. If we get some warm weather this year... I'm on it :-) xox

2 likes
Reply

Linda, do hope you get some strength back soon and feel better. xox

1 like
Reply

Thank you JGBH - I'll survive ('til I don't :-) ) - someone needs to take these beggars on!

1 like
Reply

I feel like printing this off and sending it via Royal Mail to my GP surgery.

Peanut31👹😇

2 likes
Reply

I am taking aspects of it out and taking it to mine too... also this below is from a CFS researcher at Newcastle University - in line with Dr Myhill's "It's Mitochondria not Hypochondria". (I have an interest, it's my own uni but also the City where one of the first hypothyroid persons was treated with NDT AND where I've had less than reasonable treatment from endos.)

meassociation.org.uk/2017/1...

1 like
Reply

Please excuse the intrusion, but are you still in the north-east, LindaC? I am, but I live about as far west as it's possible to be in the region.

I had no idea about the first treatment with NDT having taken place in Newcastle. Still haven't tried the regional endos...

1 like
Reply

I am Hillwoman! I'm intrigued as to where you are.

Yes, George Murray was one of the early pioneers - I'll try posting the link tomorrow.

NOTE ON THE TREATMENT OF MYXCEDEMA

13Y HYPODERMIC INJECTIONS OF AN

EXTRACT OF THE THYROID GLAND

OF A SHEEP.

Read in the Section of Therapeutics at the Annual Meeting of the

British Medical Association held in Bournemouth, Jul41,

1891.

By GEORGE R. MURRAY, B.A., M.B.CAMB., M.R.C.P.LOND.,

Newcastle-on-Tyne.

MIYXCEDEM1A has until recently been considered an incurable

disease. Since the pathology of this remarkable conditioi,

however, has become more fully understood, hopes of the

possibility of greatly relieving the symptoms, if not of curing

the disease entirely, have been entertained. The observations

of the symptoms which followed the removal of the

thyroid gland in man made by Professor Kocher, of Berne,

and the results of the experimental removal of the gland in

monkeys obtained by Mr. Victor Horsley 1 have firmly established

the view that this disease is due to the loss of function

of the thyroid gland. It was found by Dr. von Eiselsberg that

if the thyroid gland was successfully transplanted from the

neck of an animal to some other part of the body, it was capable

of continuing its functions, and so preventing the onset

of the symptoms which would otherwise have followed its removal

from the neck. Mr. Horsley then suggested that grafting

a healthy sheep's thyroid gland into a patient suffering

from myxcedema should be tried as a means of arresting the

I Brown Lectures, 18b5.

Reply

Fascinating, thanks. :-)

I'm in north west Co Durham, out in the sticks.

1 like
Reply

Will be in touch soon :-) Nearly moved close by - but I'm not caulking it in this place xox

Reply

Good idea Peanut. I might just do that too. We need to show them we refuse to be fob off anymore and need to be taken seriously and that they just can't hide their incompetence behind such diagnoses as CFS, Fibromalgya, etc.

2 likes
Reply

I’m not brave enough to sign it, only two GP surgeries to pick from in area. One was in special measures. But I’m definitely printing it off and putting a stamp on it to post.

Think we all need to do it, maybe add the thyroid symbol?.

Best wishes

Peanut31

3 likes
Reply

Maybe a note point out that many of us suffer the same level of... not sure if adding the thyroid symbol would work... doubt if they'd get it anyway ;-)

1 like
Reply

I think adding the thyroid symbol might cause more problems. But that's only my opinion..

Reply

We need to find someone, somewhere who'll do this for us - there has to be someone... they will say they test our bloods... AND!? They will come up with all manner of excuses and that is why we need a strong advocate on our side.

1 like
Reply

Linda, I agree. They may just start testing blood and say as usual "all normal" and thta will be that.No forsight at all. We certainly need someone who has the ability and willingness to corellate all the data/information and push forward to find an understanding. But WHERE are we likely to find such a person? It's certainly easier, quicker and cheaper to put it down to psychological/personality problems of patients rather than a physiolocal/physical problem.

1 like
Reply

Gordon Skinner had a Worldwide Thyroid Register and anticipated having to take legal action... but, since he was effectively 'seen off', there seems to be no one like Sarah Myhill to take things that far. :-(

Reply

Dismissing patients, particularly women, has been happening for the last couple of thousand years, it is nothing new.

However, what is new is the formalisation of this dismissal as part of standard medical practice for many, many conditions. Patients are being told they have "Medically Unexplained Symptoms", are mentally ill, have Bodily Distress Disorder (or Syndrome), and what they need is Cognitive Behavioural Therapy to overcome their "false illness beliefs".

People with ME/CFS have been suffering this dismissal and sadistic behaviour for years. Soldiers with Gulf War Syndrome have been similarly dismissed.

Now the NHS is doing it to women (and a few men) with chronic pelvic pain, fibromyalgia, migraine, TMJ, chronic indigestion and gut problems and many other chronic and poorly understood conditions.

Some links on the subject :

healthunlocked.com/thyroidu...

forums.phoenixrising.me/ind...

The second link has a tendency to go off-topic but if you page through it returns to the topic eventually.

4 likes
Reply

Wessely and Weetman are major culprits re CFS/ME and hypothyroidism respectively. Thank you for those links humanbean - it is an appalling indictment on the medical profession... 'Boys Club' :-(

2 likes
Reply

It's a long story, but I once ended up in the Wessely clinic, around 1991/92, having been referred by a private neurologist who failed to diagnose the neuro damage of pernicious anaemia. Wessely had already gained some notoriety for his views on ME and Gulf War Syndrome, so when I realised that I'd travelled some 150 miles only to end up in a department that had his name near the entrance, I was horrified.

I saw one of Wessely's sidekicks, Maria Ron, who had a registrar in tow. They quizzed me for about an hour, determined to find a psychiatric cause for my ill health and asking for the details of mental health problems in my family. The best I could do - being young, naive and trying to cooperate in the hope of useful treatment - was to dredge up a great uncle with epilepsy who died in a pre-war accident. How they fell on that detail...

5 likes
Reply

Wow - FFS (excuse the...) - what a piece of work he is! Weetman spent some time at Newcastle... his line is kind of followed by the crew there.

Thanks for that info. I must get to kip now - will message you about this.

2 likes
Reply

Ya talk about lack of help. Some years ago I was seen by s consultant who told me it was my responsibility to feed myself .

!! Yes I did know that but but it was found that I had a tumour in my bowel that was causing the trouble. ! I never forgave his attitude towards me 👹

4 likes
Reply

You may also like...