Chronic Fatigue Syndrome

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Craftieka
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Joined: Mon Feb 11, 2013 10:04 am

by Craftieka on Fri Aug 02, 2013 9:19 am

Chronic Fatigue Syndrome

My son has had this for nearly two years and is slowly improving. I wondered whether you could confirm if sunlight should improve his condition as it seems to boost his energy levels and I wondered if vitamin D has a large part to play.

I am also aware of a number of children I know having the condition and would like to know whether numbers are increasing for children/teens getting ME/Chronic Fatigue, if so why and is puberty another trigger factor. I know of 6 children within 2 miles who have been diagnosed and these are all people I knew before my son had the condition. This seems a high number to me.

I would also like clarification on any scientific tests that have been made between mercury poisoning via food like tuna and injections which can be mercury based.

Last of all is there any genetic link so my teenage son has it and is my 12 year old daughter at a higher risk of getting it.

Thanks in advance.

Marianne123
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Joined: Thu Aug 01, 2013 10:06 pm

by Marianne123 on Fri Aug 02, 2013 9:47 pm

Re: Chronic Fatigue Syndrome

My understanding is that this is not notifiable. Whilst some of the country has specialist clinics other parts do not. As well as the clinics not providing ambulatory services to the severely affected some do not deal with children and others only children 16 and over. As all of the data is quoted on estimations and I believe Dr Pheby is the only researcher to attempt a partial epidemiological study it would be useful to get an idea of numbers. However that means agreeing that the same thing is being measured and using the same diagnostic protocol.

On a point to the site designers, it is easier to post a complete reply if the question can be seen at the same time by the person trying to reply as some points are quite long and it is difficult to remember all of them.

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Sue Luscombe
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Joined: Wed Aug 07, 2013 11:19 am

by Sue Luscombe on Wed Aug 14, 2013 9:09 am

Re: Chronic Fatigue Syndrome

Hello Craftieka

Sunshine does have a feel good factor and being out in it helps this, as well as providing essential Vitamin D. Regular, safe summer sun exposure is definitely helpful and should be encouraged. Vitamin D is an interesting vitamin and recently new recommendations have been issued by the Chief Medical Officer (CMO) of UK (2012).

Symptoms of Vitamin D deficiency are not dissimilar to aches and pains experienced by those with CFS/ME. However we are also becoming aware how many, especially children, do have low Vitamin D levels, but the significance is not fully understood. There are certainly those who are more severely affected and spend a lot of time indoors who are at risk of a low Vitamin D intake and blood levels. The CMO recommends taking a Vitamin D supplement of 10µg/day, for children age 6 years and above, and adults with low sunlight exposure.

There have been some concerns about the levels of heavy metals such as mercury in oily fish including tuna. This has prompted guidance on safe levels of consumption of oily fish for the general population in order to balance benefits of omega-3 essential fatty acids with any risks from overconsumption. Details of these guidelines and how much is safe to eat for different age groups can be found on the British Dietetic Association Food Fact Sheet http://www.bda.uk.com/foodfacts/omega3.pdf
Sue Luscombe
Specialist Dietitian and Nutrition Consultant - R.D.

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Dr Caroline Grayson
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Joined: Wed Aug 14, 2013 10:20 am

by Dr Caroline Grayson on Thu Aug 15, 2013 12:11 am

Re: Chronic Fatigue Syndrome

I think we are learning more about the role of vitamin D as vitamin D deficiency does appear to be associated with aches/pains. Children who are not spending time outdoors are at higher risk of deficiency and I am now checking vitamin D levels as part of my initial screening bloods and providing supplementation if vitamin D is deficient.
In terms of your question about incidence increasing we know that between 0.4- 2% of childhood population may develop symptoms at some point. With increased awareness it may look like the incidence is increasing and we may be diagnosing children with milder symptoms. There does appear to be a peak in incidence in the teenage years which is why it may seem that a number of young people have been diagnosed locally.
There does appear to be some genetic pre susceptibility to developing CFS/ME and it is an area which is being researched.
I am not aware of the recent recommendations about mercury but I note Sue's reply

Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

cags2015
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Joined: Thu Jul 11, 2013 10:23 am

by cags2015 on Thu Aug 15, 2013 6:28 pm

Re: Chronic Fatigue Syndrome

The majority of the better respected ME charities and international patient groups estimate the prevalence of ME at around 0.1%-0.5%. Jane Colby of the Tymes Trust was involved in the largest research project in childhood ME in UK schools (Dowsett/Colby1997) - the study suggested 'prevalence in this population of 70/100,000 in pupils and 500/100,000 in staff. Esther Crawley undertook a small research project in 3 UK schools and came to the conclusion that prevalence was 1%-2%, although the criteria used would have picked up fatiguing disorders rather than ME. Subsequently prevalence figures are now being quoted as 0.5% to 2%, which is a ridiculous variation and shows that they have no idea what disease they are supposedly studying!! I suspect that the higher prevalence figures include children with self-limiting fatigue, possibly of a post-viral origin, and it is these cases that push up the recovery figures.

On the subject of whether childhood ME is increasing amongst teenagers, I would expect paediatricians to be seeing an increasing number of cases particularly amongst 12-14year old girls. My daughter is one of many, many girls who became very ill immediately following their HPV vaccination in year 8 at school (age 12-13). She was subsequently diagnosed with ME/CFS and then with POTS. Medical professionals refuse to acknowledge a link with the HPV vaccine, but I remain convinced that my daughter is suffering from vaccine-induced ME and POTS. Interestingly, Japan has recently withdrawn it's recommendation of the HPV vaccines (both Cervarix and Gardasil) due to the high number of adverse events associated with them, including fatigue, muscle weakness and pain.

MichaelC
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Joined: Tue Aug 13, 2013 8:09 pm

by MichaelC on Fri Aug 16, 2013 4:13 pm

Re: Chronic Fatigue Syndrome

AYME (Association for Young People with ME)

0845 23 23 89

http://www.ayme.org.uk

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