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5 June - Jeremy Vine BBC R2 - chronic fatigue.....CFS

slysaint

slysaint

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charles shepherd

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BBC Radio 2: Jeremy Vine show discussing chronic fatigue today (Monday June 5th)

Jeremy Vine will be discussing 'chronic fatigue' with the in house doctor at some point after 12 noon today (Monday 5th June)

Please note that the MEA has not been involved with the preparation of this programme and that it has nothing to do with the programme that will be covering children with ME/CFS and controversies surrounding the PACE trial - which we are closely involved with

BBC radio 2 listen live:
http://www.bbc.co.uk/programmes/b00gwg55

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
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charles shepherd

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charles shepherd said:
BBC Radio 2: Jeremy Vine show discussing chronic fatigue today (Monday June 5th)

Jeremy Vine will be discussing 'chronic fatigue' with the in house doctor at some point after 12 noon today (Monday 5th June)

Please note that the MEA has not been involved with the preparation of this programme and that it has nothing to do with the programme that will be covering children with ME/CFS and controversies surrounding the PACE trial - which we are closely involved with

BBC radio 2 listen live:
http://www.bbc.co.uk/programmes/b00gwg55

Dr Charles Shepherd
Hon Medical Adviser, MEA
Click to expand...


Sounds as though this item will be on at 1pm and concentrating on 'tired all the time' - a VERY common problem in primary care…..
 
slysaint

slysaint

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He has clarified............'there is an illness called Chronic Fatigue syndrome...........but we are not talking about that here'.

eta: Interesting; I emailed earlier to basically put them straight on the difference, and to get their facts straight........I'm not saying they took any notice, but he has now clarified again they are talking about 'tired all the time' or just fatigue.
 
slysaint

slysaint

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Reading out a letter from someone who had Chronic Fatigue Syndrome 'later called ME'; Dr Jarvis is now talking about ME.
Another person diagnosed with ME, since diagnosed with Lyme.
Again another person with ME...........saying NHS do not recognise the disease.........the DR says that is incorrect, the NHS do recognise it.

Caller now PVFS, then told it was CFS.
This is getting more interesting.
Dr responding with talk about glandular fever, triggered by exhaustion and mental stress.
Caller was told 'if you have glandular fever in your blood its ME, if not it's chronic fatigue'.

eta:
The program had more contributions from people with ME/CFS than anything else....................
hopefully that will help show the BBC how the name CFS and subsequent misuse of chronic fatigue can and has caused so many problems. The only time there was any glimmer of clarity of definition was when they used 'ME'.
 
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ash0787

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lots of people contacting them with cfs by the sounds of it though, the woman speaking seems pretty good actually, seems to be a GP of some sort ?
 
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charles shepherd

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I didn't manage to listen to the whole segment over lunch but the information on both chronic fatigue/tired all the time (which was the subject for discussion) and ME/CFS (where I have appeared with Dr Sarah Jarvis on the BBC previously) seemed OK

In particular she emphasised the fact that ME/CFS was completely different to being 'tired all the time' that it was a very disabling illness, and that management was uncertain/controversial

In addition to some calls from people with ME/CFS, there were useful contributions on haemochromatosis (an important part of the differential dignosis of ME/CFS), Lyme Disease and burnout fatigue

More general info on the presentation and symptoms of haemochromatosis (iron overload) and why it can sometimes be misdiagnosed as ME/CFS:

Although haemochromatosis is inherited, the build-up of iron in the body happens quite slowly and symptoms do not usually appear until a person is aged 30 or 40 years old. In women, this is commonly closer to 50 years. For many the lifetime build-up of iron is quite small and does not cause clinical problems. When symptoms do appear, they may include the following:

  • tiredness, fatigue or lack of energy
  • a feeling of weakness in your limbs
  • pain in the joints, especially in the knuckles and in the joints of your first two fingers
  • pain in your stomach or abdomen
  • loss of libido (sex drive) and possibly
  • impotence or early menopause
  • evidence of liver damage from scarring (fibrosis) and cirrhosis
  • cardiomyopathy (disease of the heart muscle)
  • type 2 diabetes
  • a yellowing or ‘bronzing’ of the skin.
Some people diagnosed with haemochromatosis report having mental confusion, mood swings and depression.

And here:

http://www.nhs.uk/conditions/Haemochromatosis/Pages/Introduction.aspx

CS
 
Learner1

Learner1

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Why can't you have CFS AND hemachromatosis?

I agree that some people may have hemachromatosis causing their symptoms and will be cured by bloodletting, but for some of us it's a comorbidity, where we have a host of immune, gut, HPA, circulatory issues which bloodletting won't fix.

(I'm bringing this up because I recently had a hematologist screaming at me that if I didn't have iron on the brain, I could see that bloodletting would fix my fatigue... My 2 CFS doctors definitely think its an issue to be dealt within the entire context of what's wrong with me, and that cavalierly draining me of blood could be a problem, too.)
 
Learner1

Learner1

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Learner1

Learner1

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...also my 23andme results had the hemochromatosis SNPs. The hematologist didn't believe it, and insisted on his own test, which matched what 23andme said.

Of note, I'm compound heterozygous for the 2 main SNPs, which is only about 10% of cases. And my labs have varied depending on timing of high dose vitamin C treatment and chlamydia pneumoniae titers... apparently cpn likes iron. So there are several variables, not just iron...
 
J

JamBob

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Learner1 said:
...also my 23andme results had the hemochromatosis SNPs. The hematologist didn't believe it, and insisted on his own test, which matched what 23andme said.

Of note, I'm compound heterozygous for the 2 main SNPs, which is only about 10% of cases. And my labs have varied depending on timing of high dose vitamin C treatment and chlamydia pneumoniae titers... apparently cpn likes iron. So there are several variables, not just iron...
Click to expand...

How does the blood letting affect you in relation to your CFS/ME symptoms would you say? A close relative has recently been diagnosed with Haemochromatosis and has terrible problems after each pleb. She is completely fatigued and has to lie down and not do much at all for several days. Her response reminds me a bit of how I feel during PEM - completely unable to do anything.

Was just thinking it must be terribly hard on you to have ME and then have to go for plebs too :( .
 
Riley

Riley

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A relative of mine found out he had hemachromatosis from 23andMe as well. He wasn't having any symptoms and just discovered it by chance, and his doctor confirmed it.
 
Learner1

Learner1

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JamBob said:
How does the blood letting affect you in relation to your CFS/ME symptoms would you say? A close relative has recently been diagnosed with Haemochromatosis and has terrible problems after each pleb. She is completely fatigued and has to lie down and not do much at all for several days. Her response reminds me a bit of how I feel during PEM - completely unable to do anything.

Was just thinking it must be terribly hard on you to have ME and then have to go for plebs too :( .
Click to expand...
That's exactly why I have refused phlebotomy so far... I regularly get a dozen tubes of blood taken for labs, so that helps, and my serum ferritin is under 300 - phlebotomy is definitely recommended when its over 1000.

There are confounding factors too, like a c. pneumoniae infection and I take a lot of vitamin C...

I'm working with 2 very good CFS doctors and investigating further...we'll work something into my treatment plan, but I don't see rushing off to drain myself of blood when I work so hard to put good stuff into it that helps me...not sure there's a perfect answer...
 
PhoenixDown

PhoenixDown

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The part about Chronic Fatigue starts at 1:09:35, if you ask me it's not worth listening to.

The doctor says depression causes tiredness which I strongly disagree with, depression is a lack of enjoyment and/or motivation.

She apologised for doctors not believing in M.E in the past but says it's no longer disbelieved.

At 1:26:00 she says CFS can be caused by mental stress which I also strongly disagree with.
 
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charles shepherd

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Demepivo said:
@charles shepherd have the MEA been in touch with Radio 2 to offer help with future programmes or have a discussion on ME/CFS?
Click to expand...

Not yet - I'm afraid I didn't have time yesterday to add this to a very long 'to do' list

And I've been in London all day today at research related meetings and have only just got home to Glos!

I will, however, be discussing ME/CFS with the BBC tomorrow morning………

As far as Jeremy Vine's Monday medical slot is concerned, I suspect that having done chronic fatigue this week (including ME/CFS) they will be reluctant to return to an ME/CFS only session with their GP in the short term. But I will try….
 
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