Just to inform that the paper I posted 7 days ago:
Front. Endocrinol., 20 March 2018 | doi.org/10.3389/fendo.2018....
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
Begoña Ruiz-Núñez, Rabab Tarasse, Emar F. Vogelaar, D. A. Janneke Dijck-Brouwer and Frits A. J. Muskiet
has had a truly fantastic uptake of readers in the 7 days of publication (over 22000). This shows the interest in this paper and the importance of the discovery of related CFS and lowered FT3.
Written by
diogenes
Remembering
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Thank you Diogenes, have you given a copy of this paper to NICE, as they are writing up new guidelines and the credibility of the PACE report is being contested?
ME Association are aware and have done their own piece on it. They are stakeholders for NICE. It has also been widely shared on twitter, ME CFS forums and led to plenty of discussion. We thyroides with ME have been explaining that even the U.K. ME CFS biobank have only tested TSH and T4 in their samples so until all patients get full testing no one can say that this is not relevant to your case.
It has been a fantastic piece to get the conversation into the detail of differential diagnosis and biomarkers of serious illness moving on.
Thank you cwill, I truly value your knowledge and appreciate you being so on the pulse - you are such an asset for us all.
I am wading through the non-euthryoid swamp of fatigue awaiting the dreaded CFS/ME clinic...which as we have discussed before I hope to attain diagnosis and then scarper - as fast as I can - fueled by my Liothyronine ... before the medieval CBT/GET treatment begins
So sick of hearing that ME or CFS is a diagnosis of exclusion when so many tests are either not carried out, read ineptly or ignored. We all want to raise awareness of what is relevant to us but there is a lot of overlap so the need for at least a comprehensive thyroid panel needs to get through.
I go to a CFS clinic and meet lots of other patients. As I've settled in I've slowly realised that they offer NO treatment. And the more I've started to think the best service they could offer patients (given the best idea they've got is pathetic art therapy delivered by people who aren't art therapists) is to give more detailed tests for all the other illnesses they could have.
Whereas as it stands those tests are either done quickly by GPs, or quickly on a single day in Infectious medicine, or similar department. It seems very obvious that a CFS specialist clinic should be specialists in identifying other possible diagnoses.
Certainly. When the news broke that GPs were offered financial incentives to not refer on for consultant care I was astonished and furious. I worked in and ran clinics in the era of consultants collaborating, they could literally be asked to assess a patient in another discipline clinic and give their opinion. Whilst we have progressed in some ways most of us have issues that cross speciality boundaries so pursuing one referral at a time for unrelenting fatigue that may have many causes is particularly troublesome. We need about 5 specialists to be involved in the less complex cases. And as you say that assumes that the GP actually runs the right initial screening and doesn’t simply pronounce it all normal, without monitoring trends and/or looking at the whole picture.
My view of the remaining clinics is that they peddle snake oil. A FOI request recently revealed a cost of £3-4000 for a course of ‘treatment’ with psychologists and OTs the most commonly employed staff. Get a diagnosis if necessary and then leave is always my advice..
The PACE trial management detail is currently being analysed. This weeks worsst news is that up to 50% of participants were not found to be eligible for ME CFS diagnosis with their very open diagnostic criteria. It is not yet clear how much of the analysed data is from these ineligible data sets. As the saying goes: You had one job! And CBT GET was only ever tested on the most mild of cases...
£3000-4000 is really shocking. I wonder how much it costs at my centre. The 'treatment' offered was one-one-one sessions of an hour with a person with no special skills. I believe if you're doing extremely unhelpful things like working yourself into the ground, or suffering medium self-loathing they will help. But myself and friends I made at the centre spent the whole time wondering what was supposed to be happening
I saw someone every 6 weeks for a year, and I liked it well enough. I got to talk over what exercises I was trying. Once or twice I'd had an upsetting run in with friends or family about my illness and they were sympathetic. But nothing I would call a treatment! I would definitely have turned it down if I thought I was wasting thousands of pounds of tax-payers money
The higher rates I hope are from the centres that run a more comprehensive programme. I hear of moderately affected people being told to attend one session a week for 2 hours, for a course over eleven weeks. And they are told. These are the diehard CBTGET centres I think.
So someone to talk to that might be helpful and a bit of art? They are really trying hard aren’t they? I am glad that you have others to talk to but they really have no idea how to do this. I wouldn’t worry about wasting NHS resources, the NHS and our Jeremy don’t seem too bothered or the T3 issue would have been sorted sharpish.
Yea, it shocks me how slap dash it is. I do feel like me and a few mates could run something better with no training - and that's including the fact I can't really do anything
It amazes me they have no teaching skills, no counselling/listening skills, and that they will run things like art or mindfulness with no skills!
I have never understood why anyone would want a diagnosis of ME/CFS? As far as I understand it, the diagnosis just makes life harder for patients, and there are absolutely no benefits.
After all, once someone is diagnosed with ME/CFS doctors blame everything on that and never test anything else. It seems to be a way of removing health care from patients to save money.
And the "treatment" of CBT and GET is an unmitigated disaster for people with the condition.
So, why do people seek the diagnosis? I would avoid it like the plague.
I agree. For some people in some areas of the country they want a consideration of all their symptoms, however awful the discrimination and stigma of this one. My GP was very quick with the label and over a decade later I am still uncovering the real diagnostic issues.
The problem with being labelled is that it only takes one doctor to label a patient with something and it sticks for life. It means that a single doctor can act as judge, jury and executioner and the patient isn't even aware that the trial has happened.
Doctors never seem to question the labels put on by other doctors, nor do they change them or delete them. So a doctor disliking a patient can ruin that patient's life in childhood or teenage years and they are stuck with it for the rest of their life.
I know that some doctors detest patients with a diagnosis of ME, therefore I would do everything in my power to avoid that diagnosis and any associated labels.
For the CFS patients I've met I've actually been surprised how much investigation and treatment people are getting. Many patients are having ongoing investigation in neurology or wherever. Some even have very supportive doctors in one specialism or another who acknowledges their illness, but feel the technology isn't there to treat them.
It's actually a lot better than the experience I've had as a thyroid patient! The attitude I've had from doctors with regard to thyroid is just "Some people just end up untreatable. I've got no more to offer you". Whereas with CFS there seems to be at least the chance of acknowledgement there is something find able going on.
I'm surprised that anyone gets investigations and treatment. I didn't know that happened for people with ME/CFS. I think I would still avoid the diagnosis like the plague though. I don't trust doctors an inch.
I was very surprised, too, as I thought people would be getting nothing! imagine that it is just luck. My experience is that thyroid patients really do get nothing, though.
There's quite a bit of disinformation going around, though. The staff there bandy around the word 'adrenaline' a lot. Eventually I pinned one down on whether they have any opinion on adrenal fatigue. If course they know nothing, even though they are actually describing adrenal fatigue all the time, just in woolly vague terms.
She told me she can't recommend any complimentary or alternative treatments, but will mention things if a lot of patients had told her about success with them. So she wouldn't comment on adrenal testing, but pointed me to something called lightning therapy! I looked it up and it appears to be the most cynical cash grab imaginable.
People I meet at the coffee club (no one drinks coffee, obviously!) are often trying ridiculous sounding treatments, and the other half of the group are terrified to question anything. I press thyroid advice on anyone who will listen
I've heard of Lightning Therapy. It works by magic, apparently. Put some paper circles on the floor, and write the word "STOP" in one of the circles. When a patient has symptoms of ME they have to jump into the circle with arms crossed and shout STOP!
Hehe! Thinking about it I've remembered that I couldn't find out anything about the content of the treatment. It was all kept secret until you handed over the enormous fee.
Even Wikipedia didn't know as much has you've just told me! Sounds quite fun, I might try it after my meditation tonight
I was advised to pursue a diagnosis for CFS to support my DWP claim, I need this financial support in order to attain a quality of life, as I do not have any family nor other resources to rely on. I am waiting for the referral and yes I am dreading it ...I have no idea what my CFS/ME clinic is like (Sheffield?) ! I will avoid the treatment if I can and am quietly hoping that such papers as this one, Dr S Myhill submission to the GMC about the PACE report and the NICE guidelines review will all help...
DWP will not entertain my symptom of chronic fatigue without a diagnosis, just as they will not accept my chronic insomnia without the repeat prescription of sleeping tablets nor my depression without lots of anti-depressants etc. etc.
I just have to do what I can to help my self humanbean as there is no one else to help me.
If it's any consolation my experience has been fairly neutral, with positive bits. There were a few infuriating hoops to jump through at the start. But writing letter for employees and the DWP is the one thing my centre is good for. They wrote a 2 page letter for me, explaining all the self care I can't do.
I can sympathise re DWP ~ although I am lucky and have some help from family, it can't go on forever, and it's really so stressful having to jump through the hoops and still get nowhere.
They have caused me so much stress and anxiety in the last twelve months, I am at the point of selling my shabby house to live off the equity, but moving will no doubt bring it's own problems and I'm not sure my adrenals are up to it.
I'm 60 so don't qualify for my pension ~ living with no income has been horrible😰. I wish you all the best with it ~ it's a nightmare.🍀 x
Thank you for your kind words Mamapea1, at the height of my health crisis 49 y I resigned and cashed in my pension to help with my daily living expenses for a time in order to avoid the vilification of the DWP.
I have been told to present the mental health issues more prominently as it is more difficult for the DWP to dismiss ... especially suicidal thoughts.
I have my Capita assessment at home next Wednesday and I am already in a heightened state of anxiety. Luckily my CPN will be there. It is such a violation and a humiliation. Last time the assessor wrote down a bunch of lies and I had to go to appeal to get a PIP award.
Thank you for links and advice ~ I recently discovered the benefits and work one, (on this forum) and tbh never thought of Age UK ~ I suppose because I don't think I'm old 😊lol! They were very helpful when I was looking after my father though, so maybe I will try them ~ I certainly FEEL old now! 😕.
I've already cashed in everything I could, life insurance etc., house is all that's left now. I was able to return to work for a while until a period of chronic emotional stress and the menopause saw the return of the whole CFS/ME FM labels.😳
Well I certainly have the required mental health issues now, anyway, I spend most of the time shaking and trembling and head nodding, although not as bad as before I found this forum ~ could be the B12?
The anxiety that surrounds anything to to with the DWP is relentless. I was left with nothing for 5 months due to a 'HCP' lying on my assessment form last April ~ I managed to get back £73.10 per week which I'm now living on, but I lost my £22 per week DLA when it changed to PIP ~ the woman I spoke to re 14 days extension for returning the form apparently didn't file it on the system, and so it was in too late and stopped.😕
I think it was the shock of the ESA assessor blatantly LYING that did me in ~ I couldn't believe it ~ she had written things I had never even done in my life, complete fabrication! I will never have another F2F without a witness or a recording device. I have since realised this is a shockingly common occurrence!😱
It took all the energy I had to get that assessment, (I was sick all the way) people had to take time off from lucrative work to take me, and then they lied about everything I said and even the so called 'examination'! Then they left me with nothing at all and Warwickshire Welfare Rights who were helping me via CAB had to threaten them with court action to get the basic allowance back.😰
I suppose if they are judging people on severe anxiety and suicidal tendencies, they're scoring a home goal with me ~ I'm much more anxious now, and just the mention of DWP makes me tremble!😳
Yes violated and humiliated is exactly how I felt/feel and I have lived and learnt regarding the dishonesty of these 'professionals'. I remain terrified but also determined to claim what I'm entitled to, from an 'insurance system' that I paid into for this very reason!
I wish you the best of luck 🍀 with your assessment next week and I won't say try not to get stressed out as you may need to be 👍. It's probably a silly question, but what's a CPN please? It sounds like something I need lol! 💕x
I emailed it to my doctor and he emailed me back saying he had got numerous emails considering that study. I am from Finland and over here CFS is now very hot topic!
My doctor was thankful for people emailing this study to him and said he will read it carefully with time to get most of it!
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CFS book / thyroid / scientific paper on ME/CFS by Dr Sarah Myhill
The Mutant Thyroid Hormone Receptor Beta R320P Causes Syndrome of Resistance to Thyroid Hormone
