ME & Type 2 Diabetes

[jennywren10]

I would really appreciate some advice about possible links between ME/CFS and Type 2 diabetes.

I have had 3 long term bouts of severe PVFS/ME the first after a viral infection in 1998 which lasted around 3 months and from which I made a complete recovery. The second bout started after a bout of flu in 2005 and lasted for about 18 months, but I gradually hauled myself back and returned to part time work only to develop swine flu in July 2009 and this time I haven't improved but the links with the previous bouts of ME have been made.

Currently I would describe myself having looked at the info published as having moderate to severe ME symptoms, and am virtually housebound most of the time and most days struggle to cope with basic daily living and personal care tasks.

I also have very limited mobility following an injury to my right ankle sustained in 1978 and 1982 which means that I have to use a mobility scooter outdoors. I have numerous other medical conditions which affect me to a greater or lesser extent and I take a seemingly increasing cocktail of prescription tablets and injections every day.

I was diagnosed in 2006 with Type 2 diabetes, which I managed successfully with diet and tablets until about 18 months - 2 years ago, since then I have been virtually continuously hyperglycaemic with all the distressing symptoms that this produces including incontinence.

Following several admissions to A & E in addition to the Metformin 1g x twice a day and Gliclazide 2 x 40g tablets twice a day, I was put on Insulin in February 2012. However the Insulin dosage kept increasing and peaked between November 2012 and January 2013 by which time I was taking 60 units of Lantus a day + up to 90 units of Novo Rapid in 3 injections a day but still it was not having any affect and my sugars remained very high.

At one point to try and show that the Insulin was not making a difference I went cold turkey and stopped all the Insulin but remained on the tablets and my sugar levels came down a bit for a few months before they started to climb again. So now I am back on 2 injections a day and the dosage is gradually increasing again so now I take 10 units in the morning and 34 in the evening plus now twice daily injections of 5mg of Byetta.
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It is now really difficult for me to tell where the symptoms of one condition starts and the other stops especially as several are similar, but I know I am getting much worse and the continuous high sugar levels cannot be good for me longer term. In fact I already now have background diabetic retinopathy and some neuropathy.

Although my GP is very concerned, and sees me very regularly he admits he is out of his depth and is unsure what else he can do. He seems concerned that the hospital/community diabetic team are not monitoring me closely enough, and although he referred me to the Lincolnshire Specialist ME Service in 2010 beyond one round of their CBT Course which I did not find very helpful there appears no other help available.

The senior practice nurse at my GP surgery who is also a long term friend/colleague (from my own days working in the NHS) is convinced that my ME is affecting my diabetes control, she has said she would like to see me admitted to hospital at the regional diabetes centre for some closer monitoring but says unfortunately it is not down to her. My GP too thinks the two conditions may be impacting on each other, and hopes that you may be able to make some helpful suggestions.

For now all my GP can advise me to do when my sugar levels are very high 24.0 + is to go to A&E where they invariably check for Ketones, sometimes keep me in overnight and put me on a drip and then send me home. But this can't be a long term solution and could mean me presenting at A& E every few days.

I have tried to research the two topics on line but no-one seems to know of any research or links between the two conditions - can you offer any advice at all please?

All I know is I feel worse and worse each da and despair of ever getting any semblance of anything approaching a normal life back.

Thank you for running this service it is brilliant and I have found all the posts really helpful.

[Dr Charles Shepherd]

Firstly, some general information:

The cause of type 1 diabetes (= insulin dependent) is uncertain

Type 2 diabetes is often associated with lifestyle factors - being overweight in particular

And as some people with ME/CFS gain weight this helps to explain why type 2 diabetes might be more common in ME/CFS

But the evidence is anecdotal. There haven't been any research studies to look at any such link

Otherwise, there is no pathological reason to explain why either type 1 or type 2 diabetes would be linked to ME/CFS

And as some of the symptoms (eg fatigue) overlap it may take some time for the slower onset type 2 diabetes to be recognised

Secondly, in regard to your own situation, It's difficult to say for certain but I think it's unlikely that having ME/CFS is causing the problems you refer to

I would agree with your nursing friend that you really ought to have a referral to a diabetic specialist or regional specialist centre to see if you have some form of insulin resistance

[Dr Charles Shepherd]

Might be worth discussing this on a diabetes support network:

http://www.diabetes.co.uk/insulin/insul ... ivity.html

[jennywren10]

That's fantastic thank you so much, for your very prompt response.Having read the article you referred me to I am hopeful that my GP might be able to arrange an Insulin Sensitivity Test, he is not backward in coming forward in arranging tests for me ..... I hate just pumping drugs into me that do not seem to be doing any good!

Thanks again for giving up your time to answer questions like this, I feel sure I speak for thousands of us with ME to say just how valuable something like this is.

[Sue Luscombe]

Hello Jennywren



Your GP is absolutely right that your poor diabetes control, with constant high blood sugars, is most certainly impacting on your ME and vice versa. The symptoms of high BS are tiredness and lethargy, which can only be making the ME worse. I am sorry to hear that you are in this Catch 22 situation and, despite some changes to your diabetes treatment, you are still having a very difficult time of it.



The main cause for most with type 2 diabetes is insulin resistance, i.e.
the body’s insulin is not working adequately. Unfortunately, there is no way of testing for insulin resistance. Then, over time, the pancreas works hard to compensate for the high blood glucose levels, so that it starts to wear out. If it wears out to the extent that despite maximum dose tablets for diabetes, your BG is still high, insulin injections may be needed. The foundation stone for treating type 2 diabetes is diet and lifestyle, followed by several different types of tablets and for some insulin injections, if the blood glucose remains high.



What helps improves insulin sensitivity in the body and hence helps reduce blood glucose levels?

- increasing our physical activity levels

- if overweight, or more exactly waist size above 31ins (for
ladies), 37ins (for men), losing weight will help.

For people with ME there may be very little scope, or it may prove incredibly hard, to achieve these lifestyle goals. Reducing your carbohydrate intake will also help, but as you are on insulin there is a danger that your blood sugars could go too low if you cut back too far, e.g. if a meal contain very little or no carbs at all. We now are teaching more and more type 2s on insulin to carbohydrate-count and you may like to ask about this with your specialist diabetes team. This may be helpful for you, as it sounds as if this is something you have not tried before.



For the last 20+ years my NHS role has been supporting people like you, with hard to treat type 2 diabetes. During these years I have only seen a few with ME and type 2 diabetes, so I am not seeing any link.
However, having both conditions is compounding your symptoms and making life very difficult for you. All the best with getting the support you need to improve your diabetes.