Prof Newton and Prof Ellis transcripts from talk today 26th May 2015

[eafw]

I've got to disagree with most of the posts here. Prof Newton does a lot of good work - she works like a scientist rather than a (medical) Doctor - and is not a Wessley-ite by any stretch. This talk is short, so skims a lot of things but is very much based around looking for physiological and not psychological explanations of an illness she describes as "devastating".

My pet peeve is the reference to 'fatigue' remains when describing ME.

It gets too much emphasis for sure and is unfortunate that the word has become so tainted and used to diminish our disease by the PACE proponents. But fatigue as a proper medical concept does exist, for instance as she says, in other neurological or immune related conditions (PBC being her original thing), and as a reaction to chemo and similar drugs. This is not a belittling label in that context. Her starting point is biology not psych/anxiety/dismissal.

There is a presumption that fatigue in other disorders is the same.

Is it a presumption or an attempt to look for clues and join the dots ? We may have a unique condition but our bodies do not operate in some alternate reality outside the basic principles of physics and biology. That is, there may well be commonalities in the disease processes and mechanisms compared to other neuro-immune-metabolic problems.

and if you talk to veteran ME friendly physicians, they also agree they've never seen anything like ME before either.

Julia Newton has a good rep in the UK as ME friendly. Her work is in part funded and supported by patient groups and fundraising, and having watched her talks and videos and read some of her stuff I'm inclined to her as being on our side.

And this is the foremost biological researcher into ME in the UK.

see above, also POTS muscle testing etc.

They also are agreeing with the Dr Alastair Miller viewpoints, which are completely incorrect on nearly every relevant point.

Dr Miller is one of the PACE fools, honestly don't think she can be tarred with the same brush. Her comment on psychosocial is after she refutes the standard BPS line

"It is difficult to imagine how patients would wish to continue in this state, and when you meet somebody you realise that there is nothing to be gained for them as an individual from this diagnosis. In addition there is emerging scientific evidence that now points to underlying physiological abnormalities in those with CFS/ME, and that the any anger, frustration, depression and anxiety are secondary to those physiological symptoms experienced by individuals. "

She is saying the opposite of what Miller and friends would, ie she is saying stress and social isolation are a consequence of the illness not a cause.

 

[Bob]

@eafw, I totally agree that Julia Newton is a serious researcher, absolutely on the side of patients, and she is completely focused on looking for biomedical answers.

Usually I only express praise, gratitude and admiration for Prof Newton, and the 'fatigue' issue is my only slight bug-bear with her approach. Everything else she says is very robust, and completely along the lines of describing a serious biomedical illness deserving of biomedical investigation and treatment.

I've just had another look at her speech, and I think perhaps I've been a little bit harsh in criticising the 'fatigue' issue, as she compares ME with some interesting other illnesses that she says feature fatigue, for example:
Rheumatoid arthritis, polymyocytis, lupus, primary Sjogrens syndrome; chronic infections such as a toxoplasma, EBV, bruscella; autoimmune diseases such as thyroid disease, primary biliary cirrhosis, coeliac disease; multiple sclerosis and Parkinson’s disease.

And if her interest in fatigue leads her to investigate the mitochondria in ME patients, then I couldn't be happier. We're so used to being misled and schemed against as a community, that we recoil from the word 'fatigue' for good reasons, but if an honest researcher is making valuable insights into ME because she has an honest interest in fatigue, then perhaps I shouldn't complain. Perhaps I should be rejoicing instead!

 

[eafw]

she compares ME with some interesting other illnesses

Yes, exactly she is looking for links between illness that involve the immune system, autonomic regulation, neurology and metabolism. "Fatigue" is a common thread, so maybe there are common physiological processes, but I agree the way the word has been used against us is an issue.

And if her interest in fatigue leads her to investigate the mitochondria in ME patients, then I couldn't be happier.

I'd like to see some of the areas she's started working on pursued by other researchers as well. We need more centres and groups looking at all this. There's likely expertise in those other diseases that we could make use of. It would be good to see someone with an MS backgound come in to ME research too, I don't think as yet there is anyone - the other big groups internationally mostly seem to be immunologists ?

 

[justy]

I haven't read the rest of the thread yet... i'll get there in time but I need to make this one point:

when is this fallacy going to end?

Prof Newton said:

There are no pointers on examination or history to an alternative diagnosis and in all patients the blood tests performed in line with the NICE guideline are normal.

in an NHS GP apt they may never take a history - they certainly never took mine. On examination I had enlarged Lymph nodes on the back of my head 'we're not worried about those ones'. On examination I have neurological abnormalities - my GP has SEEN my mycolonic jerks, my GP has commented on them, but I have never been referred to a neurologist - I still get the 'cfs' diagnosis.

All blood tests (NHS) are normal - err, not mine - High ESR, exceptionally low Ferritin, Low haemoglobin, other blood abnormalities of various types to do with red blood cell shape size etc. Low Vitamin D, high IGM, low titre ANA, Low uric acid - all tests I have failed, but that the GP says 'are not improtant' and I still get the CFS diagnosis, despite what Julia Newton says above.

Apparently Borellia should be tested for if there is an indication - I worked as a gardener for many years before becoming sick and hiked and camped a lot - no one asked me anything to do with this. I reported an insect bite (not tick) that was woollen for three years!! and no one wanted to investigate.

The system for dx M.E is broken and not fit for purpose, even the appaling NICE guidelines are not being followed.

 

[justy]

I forgot to add - I have also now got NHS dx of EDSIII and Mast Cell activation but guess what? Yep you got it -according to the NHS I still have M.E!!

 

[Bob]

@justy, this is where the NHS completely fails us... Complex chronic health issues, relating to unknown or obscure conditions, needing creative and time consuming medical solutions.

I take it you've seen various consultants, and none of them have a clue what to do with you, so they've dismissed you with a CFS diagnosis? Out of interest, what is their opinion re CFS, considering all your abnormal test results?

All of my test results always come back within normal range, except thyroid stimulating hormone. But abnormal TSH results are irrelevant, apparently.

 

[Sidereal]

All of my test results always come back within normal range, except thyroid stimulating hormone. But abnormal TSH results are irrelevant, apparently.

Your TSH is high even with treatment?

 

[Bob]

Your TSH is high even with treatment?

This is a recent development for me. I'm not experiencing a typical thyroid disorder. I'm experiencing metabolic over-stimulation (muscle cramps, high temperature, fast bowel movements, mental stimulation etc), similar to hyperthyroidism, but the symptoms fluctuate wildly; I can be absolutely normal one week, but have a sudden rush of severe symptoms the next. I've got beta blockers which successfully deal with the symptoms. TSH is abnormal but thyroid hormone is normal. To me, it seems like an unusual autoimmune issue, affecting my thyroid/endocrine system. Unfortunately, when the thyroid-like symptoms flare up, my ME symptoms flare up massively. It's not been much fun. I've been too ill to see an endocrinologist, but I know what the answer will be: "hmm, I haven't seen this before - go home and take some beta blockers."

 

[mermaid]

I haven't read the rest of the thread yet... i'll get there in time but I need to make this one point:

when is this fallacy going to end?

Prof Newton said:



in an NHS GP apt they may never take a history - they certainly never took mine. On examination I had enlarged Lymph nodes on the back of my head 'we're not worried about those ones'. On examination I have neurological abnormalities - my GP has SEEN my mycolonic jerks, my GP has commented on them, but I have never been referred to a neurologist - I still get the 'cfs' diagnosis.

All blood tests (NHS) are normal - err, not mine - High ESR, exceptionally low Ferritin, Low haemoglobin, other blood abnormalities of various types to do with red blood cell shape size etc. Low Vitamin D, high IGM, low titre ANA, Low uric acid - all tests I have failed, but that the GP says 'are not improtant' and I still get the CFS diagnosis, despite what Julia Newton says above.

Apparently Borellia should be tested for if there is an indication - I worked as a gardener for many years before becoming sick and hiked and camped a lot - no one asked me anything to do with this. I reported an insect bite (not tick) that was woollen for three years!! and no one wanted to investigate.

The system for dx M.E is broken and not fit for purpose, even the appaling NICE guidelines are not being followed.

I was 'diagnosed' with CFS/ME (I use the term that the NHS use advisedly) some 6 years ago by a UK immunologist who did it on a history written out by me, but without bothering to check if my GP had done any blood tests on me (she hadn't), and he never did any on me either.

Luckily I had already been diagnosed with hypothyroidism so they could not deny me that one, (though the lab fails on the annual check to check the FT3 even though I am on T3 only now!!), but the only blood tests I had following the diagnosis were at my request after seeing a private GP. They showed a below range result with lymphocytes and platelets that persisted for a few years.

More recently I have had blood tests done at the hospital whilst following up digestive issues, and at my request had them sent to me. The lowish platelets persist, though thankfully are stable, and at least were picked up on and noted by the specialist. I had lower platelets in pregnancy some 30 yrs ago, and recognised as an autoimmune issue. I also researched low platelets and apparently fatigue is recognised as related to this condition.

There were a couple of other things below range - one of the immunoglobulins, and one other which was only just in range, plus another liver globulin result. Lymphocytes have finally staggered into range.....

Just makes me wonder how long these blood tests have shown abnormalities though, but because the basic tests done by a GP (if you are lucky) do not always extend very far, you do not know. I had never had the immunoglobulin tests done as far as I know previously. As for the NICE guideline tests..... well forget it!!

 

[justy]

Hey @Bob i'm sorry to hear you have been experiencing these thyroid issues - what is your TSH? an abnormal TSH should be looked into it. even if T4 is normal I would have thought.

What the various GP's and consultants I have seen just never look at all my failed test results together, or if they do they are never considered 'clinically significant' in isolation. The rheumy who DX EDS said it didn't explain all my symptoms so I must have M/E 'as well'. The positive ANA is ignored because the other rheumatologic markers were normal - so as I don't have Lupus, then I'm AOK as far they are concerned.

Its all a bloody mess really for anyone with complex issues. My respiratory consultant thinks 'CFS' is psychological and now that he knows I have this dx he also now believes my lung infections are 'in my mind' and that the antibiotics only cure them because they are working as 'placebo'. He once told me I had significant scarring in my left lung (the one I keep getting infections in), but since the CFS dx he now says the scarring is not clinically significant. They just make it up as they go along.

 

[jimells]

Fatigue is one of those very vague words that really should not get used in any scientific debate. Its too imprecise. Hopefully with more research they can start talking about very specific and verifiable things instead.

Do we even know how our bodies sense "fatigue"? Could it largely be as simple as sensing a reduced blood flow in the brain?

 

[jimells]

My respiratory consultant thinks 'CFS' is psychological and now that he knows I have this dx he also now believes my lung infections are 'in my mind' and that the antibiotics only cure them because they are working as 'placebo'

Well obviously you want to stay sick. I mean, anybody whose thoughts can conjure up a bacterial infection is certainly capable of killing bacteria with thoughts.

 

[mermaid]

I have had bad 'fatigue' this week - for me that is a feeling of grogginess, as if I am hungover, even though I have slept quite well. I forced myself outside, and often I find I am better outside - so is this that there is more oxygen out there helping out?

 

[Vasha]

@justy @Bob @jimells

Well obviously you want to stay sick. I mean, anybody whose thoughts can conjure up a bacterial infection is certainly capable of killing bacteria with thoughts.

Justy, I'm so sorry to hear this-a bloody mess, indeed! And @Bob-I hope nothing is being overlooked that is too serious.

This thread reminded me that ProHealth recently linked to an article that explores the social contruction of medicine through the lens of neurasthenia and ME. The authors are sociologists. They compared the dominant medical literature on neurasthenia in the late 1800s with the dominant medical literature on ME in the late 20th century, and considered the socially based explanations for each. Their methodology is somewhat limited, but overall the paper supports its argument that the "reasons" understood to be behind illness are closely tied to contemporary cultural values. Guess what? Neurasthenia was considered primarily a problem for high status, especially intelligent, and hardworking men, and secondarily a problem of high status (but by definiton not intelligent women). It was seen as physical. ME, OTOH . . . a problem especially of women, especially those who can't handle their own ambition and thus can't cope.

Nothing anyone here doesn't know!

But it and Justy's and Bob's (and so many others') stories made me think it would be interesting to do a sociological study that involved collecting actual ME patients' test results and having groups of doctors review them, some blinded to the CFS or ME or CFS/ME diagnosis and some not, and suggest diagnoses.

My hypothesis is the blinded group's suggestions would be very different from the unblinded group's.

I have no idea who would actually do it, of course. Maybe someone already has?

Vasha

 

[Vasha]

@mermaid, could there be something in your house you're reacting to?

 

[alex3619]

Do we even know how our bodies sense "fatigue"? Could it largely be as simple as sensing a reduced blood flow in the brain?

No, that seems unlikely. We know some of it. That is what the Light's work is on. What we don't know is what else is involved, how many factors there are, and how the brain integrates those. It is also possible that fatigue is a dozen different things and blood flow is one, acid sensors another, and so on, all integrated by the brain to create "fatigue". In that scenario different diseases would have different combinations of factors in different proportions, but then again that might be the case for CFS or even ME.

 

[Helen]

I'm not experiencing a typical thyroid disorder. I'm experiencing metabolic over-stimulation (muscle cramps, high temperature, fast bowel movements, mental stimulation etc), similar to hyperthyroidism, but the symptoms fluctuate wildly; I can be absolutely normal one week, but have a sudden rush of severe symptoms the next.

Hi Bob, just wanted to ask if you were tested for thyroid antibodies? If high, they might cause you hyperthyroidism , normal state and hypothyroidism back and forth. Antibodies aren´t always found in blood. A fine needle aspiration in the thyroid is supposed to be more valid according to late Dr. Bo Wikland. There is a good text about this and thyroid antibodies here.

Sorry for taking the thread off topic.

 

[Bob]

Hi Bob, just wanted to ask if you were tested for thyroid antibodies? If high, they might cause you hyperthyroidism , normal state and hypothyroidism back and forth. Antibodies aren´t always found in blood. A fine needle aspiration in the thyroid is supposed to be more valid according to late Dr. Bo Wikland. There is a good text about this and thyroid antibodies here.

Thanks Helen. Yes I was tested for thyroid antibodies and they were all normal. I can't imagine getting that needle-in-the-thyroid-gland test on the NHS, but I'll have a look at your info. Thanks again for the info.

Sorry for taking the thread off topic.

lol, you didn't start it!

 

[mermaid]

@mermaid, could there be something in your house you're reacting to?

Yes, it's entirely possible. Radon gas is one possibility which I have tried to ignore (house was tested and found to be just above the threshold, though were told that having lived most of our life in a low radon area and non smokers that our risk was small for lung cancer), also it's a mouldy area, though we have tried to fix that as best we can.

 

[Cheshire]

The video of the lecture is now available:
http://www.gresham.ac.uk/lectures-and-events/standing-up-for-fatigue