Diagnosis of Chronic Fatigue Syndrome/ME – What’s missing?

It is estimated that around 250,000 people in the UK suffer from Chronic Fatigue Syndrome  (CFS), also known as myalgic encephalomyelitis (ME), with 1 in 4 of these sufferers experiencing severe symptoms that affect quality of life and seriously reduce mobility. It is a condition, along with many other chronic diseases, that appears to be in a ‘grey area’ in terms of treatment and a possible cure. But could we be looking in the wrong direction for an explanation?

This weeks article is provided by Dr Alyssa Burns-Hill PhD a leading holistic hormonal health specialist who has previously provided us with three fascinating pieces on ‘Metabolism & Thyroid Function’, ‘Thyroid Health’ and ‘Support for Disturbed Sleep’.

Today, Alyssa looks at the aforementioned condition Chronic Fatigue Syndrome (CFS) and the often overlooked importance of adrenal and thyroid function when it comes to treating such conditions. She also  looks at how a holistic, systems-based approach alongside a relevant supplement programme (to make up for nutritional shortfalls) can help to bring you back to an optimal level of health.


Chronic Fatigue Syndrome (CFS) or Myalgic Encephalopathy (ME) usually ends up being a diagnosis of last resort.  The NHS says that:

“It is not known exactly what causes CFS. Various theories have been suggested, including:

  •  a viral infection
  • problems with the immune system
  • an imbalance of hormones
  • psychiatric problems, such as stress and emotional trauma.1

However, with regard to treatment the NHS aims to reduce symptoms via Cognitive Behavioural Therapy (CBT), a structured exercise programme and medication to control pain, nausea and sleeping problems.  It is admitted that these approaches can help improve CFS in most cases, but does not have confidence in those approaches providing a ‘cure’1.

I’d like to look at this a bit more holistically and let’s see what else we may be able to draw out of information that we know about.  I won’t be able to go into a full explanation here but my aims are that this article may offer a viewpoint that brings seemingly disparate things together.

To me, all of the above mentioned problems are linked: a viral infection means the immune system isn’t coping very well; an imbalance of hormones likely relates to stress or rather adrenal issues (cortisol, the main stress hormone, modulates immune response) and also thyroid hormone problems can play a role in these conditions that often goes undiscovered through conventional means of testing – Thyroid Stimulating Hormone and if you are lucky free T4!

Adrenal Fatigue and Stress and Thyroid Hormone Dysfunction

The adrenals are so essential, yet so marginalised by medicine.  Stress and the stress hormones are a neglected area of medical practice in spite of the fact that stress-related health problems have replaced infectious disease as the primary health concern.

Cortisol, our main stress hormone, has many functions and is linked with blood pressure, immune response, blood sugar regulation as well as interfering with thyroid hormone’s ability to connect with tissue.

High cortisol can be linked with on going inflammation and this can be the starting point of many chronic diseases.

High cortisol will also have an impact on T4 to T3 conversion causing conversion to rT3, which may effectively cause a deficiency of thyroid hormone.  This deficiency can then be exacerbated by the high cortisol, which inhibits thyroid hormone from connecting with tissue.

Adrenal fatigue and chronically low cortisol can mean that the immune inflammatory response isn’t turned off.  This means that the body can be stuck in a constant low-level inflammatory response and this can lead to conditions such as Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Multiple Sclerosis, or Coeliac Disease, for example.

With chronically low cortisol, thyroid hormone also has problems connecting with tissue resulting in, yet again, a potentially functional hypothyroid state.

Fatigue, poor stress response, low blood sugar and low blood pressure can all be linked with low adrenal function.

Vitamin and Mineral Deficiencies

Alongside, or even instead of, the above-mentioned hormone problems it’s important to consider some very prevalent and relevant vitamin and mineral deficiencies that can be contributing to, or even causing, the low energy, lack of stamina, aches and pains, poor immunity as well as an increased risk of a number of chronic diseases.

Vitamin B12

B12 deficiency has many symptoms that can look like hypothyroidism, which means that it can affect you physically, mentally and emotionally.

B12 isn’t toxic so you can supplement without fear.  The most effective form is methylcobalamin and to be honest it’s the only one to use.  It’s the natural form that’s found in nature and it’s pre-methylated, which means that it’s ready for your body to use.  This is especially important if you’re not methylating properly (linked with another vitamin deficiency) as it means that your body doesn’t have to process it.  High dose B12 supplementation is recommended, but you can start low and build up

You should be especially aware of B12 deficiency if you are vegetarian or vegan and if you are on medication: Proton Pump Inhibitors, HRT, the Pill or glucose regulating drugs.

Vitamin D3

Vitamin D3 deficiency or insufficiency is so common it can almost be guaranteed to be worth supplementing and again large doses are the ones that are going to achieve a therapeutic impact.  Low D3 is linked with depression, arthritis, MS, various autoimmune conditions and so it goes on.

I tend to recommend using at least 5,000 ius per day, but you can work with much higher doses, especially if you supplement with Vitamin K2 at the same time.  It has to be said that Vitamin D3 is believed to be toxic at high doses, but you have to go a very long way to get there.  The Vitamin D Council says that,

“Very high levels of 25 (OH)D can develop if you take more than 10,000 ius per day every day for three months or more.  However, Vitamin D toxicity is more likely to build up if you take 40,000 ius per day every day for three months”3.

It’s worth starting off with 10,000 ius per day for a month and then dropping to 5,000 ius for maintenance.  Taking a break now and then is always a good thing too!

We should get our Vitamin D3 supply from exposure to the sun, however, we are so far north in the UK that it’s difficult for us to get enough at the right ultra violet frequency for your body to make it.  We have also been persuaded to use excessive amounts of sun protection lotion so that our skin is effectively covered even when we are out in the sun.  This may well be related to the increase in Rickets in the UK in recent years4.  The commonly accepted cause of Rickets is lack of Vitamin D3.  If you have darker skin then the likelihood of being deficient is increased as it will take more exposure to sunlight for your body to be able to make the vitamin.

Drugs that can interfere with vitamin D levels in the body are corticosteroids such as prednisolone and inhalers for asthma; certain types of cholesterol lowering drugs and the weight loss drug, orlistat (known by the brand name, Alli).

Magnesium

Magnesium is a mineral that is also often deficient in a lot of the population and it is an essential requirement for many of the body’s systems.  When we think of a lot of the problems exhibited by CFS/ME sufferers, for example:  aches and pains and fatigue in particular it’s worth thinking about magnesium deficiency.  Magnesium is necessary for muscle relaxation and it modulates cellular action related to inflammation.  In fact, research has found that low magnesium levels are linked with an elevated C-Reactive Protein level (CRP is an inflammatory marker)5.

Diuretics can increase the loss of magnesium in urine and Proton Pump Inhibitors have been found to cause magnesium deficiency.  Also taking magnesium with blood pressure tablets may drop blood pressure so your dose may need adjusting downwards.  Be aware of low blood pressure signs if you supplement.

As you can tell this is not a comprehensive review and neither does it propose a full and proper protocol for someone diagnosed with CFS/ME.  However, I hope that this has started to join the dots as to why there is never a magic bullet that will resolve a chronic health problem.  Working from a more systems-based approach helps to support the body in its own natural efforts to adapt and compensate its way back to its most optimal place.  Supplements used properly, with understanding and relevance, could provide the missing links in a health puzzle such as CFS/ME.


Dr Alyssa Burns-Hill PhD is a leading holistic hormone health specialist with practices in Harley Street, London, Jersey in the Channel Islands and an international virtual clinic with patients all over the world. She is a fervent supporter of the charity Thyroid UK, being a Trustee and on their advisory panel, supporting their aims of promoting better thyroid health.

Alyssa has a background in health that stretches over 20 years – with an academic background in health promotion (MSc) and a PhD focused on ‘Holistic healing from breast cancer through the lens of hormones: Synopsis and synthesis’. More information about her and her book ‘Weight Loss Winners & Dieting Downfalls’ (including buying online) can be found by following the link below. The book provides a wealth of information including:

 “Learn key factors that can help you overcome your Dieting Downfalls and maximise your Weight Loss Winners with questionnaires to assess how you shape up in hormone health. This is not another diet book this information will make a difference whatever regime you choose to follow. If you want to know why, this book will provide you with hormone insights that impact men and women alike.”

www.dralyssaburns-hill.com


With many thanks to Alyssa for this enlightening article. Alyssa has previously written blogs for us and you can find the links to those articles below. If you have any questions regarding the topics that have been raised, or any other health matters please do contact me (Amanda) by phone or email at any time.

Amanda Williams, Cytoplan Ltd
amanda@cytoplan.co.uk, 01684 310099


Relevant Products

Vitamin B12  -Our sublingual Vitamin B12 is at a higher potency of 500µg per tablet, and beneficially in the form of Methylcobalamin, and hence is universally bio-effective and ideal for vegetarians and vegans. Sublingual Vitamin B12 provides greater absorption as it avoids the problems associated with digestive tract uptake.

Vitamin D Supplements

Vitamin D3 – Vitamin D is now considered one of the most vital vitamins for health and protection and one of the most depleted, particularly in pregnant women, the elderly and those that rarely get outdoors. Vitamin D3 is the most bioavailable form of this nutrient.

Vegan vitamin D3 – Vegan vitamin D3 – A Wholefood supplement from lichen ideal for vegetarians and vegans. 60 tablets for 60 day”s supply with one tablet providing 62.5µg (2500i.u.) Vitamin D3 (Cholecalciferol) at 1250% of RDA. Vitamin D3 is the most bioavailable form of this nutrient.

Vitamin D3 Spray – Cytoplan vitamin D3 spray provides 5ug/200iu of plant-sourced vitamin D3 in just one spray (100% of RDA). With each supplement comprising 20ml this provides between 30 to 150 days supply of this important nutrient (dependant on your daily requirement).

Magnesium Supplements

Biofood Magnesium – Biofood Magnesium tablets are effectively an organic matrix form of magnesium, complete with natural amino acid carriers to ensure transport to sites of need within the body. Biofood Magnesium is 100mg per tablet potency and combined in a probiotic culture. This is the 60 capsules 60, for 120 capsules please follow the link.

Magnesium Citrate – Magnesium Citrate is the best of the non-food forms of magnesium. As a citrate it is readily absorbed into the bloodstream via the citric acid cycle. Easy-to-take gluten free capsules which are suitable for vegetarians and vegans.


Relevant Cytoplan Blogs

Metabolism & Thyroid Function

Thyroid Problems – the difference between ‘form’ and ‘function’

Support for Disturbed or Disrupted Sleep

Stress and Cortisol


References

  1. http://www.nhs.uk/conditions/chronic-fatigue-syndrome/Pages/Introduction.aspx
  2. http://www.ncbi.nlm.nih.gov/pubmed/17902518
  3. https://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/#
  4. http://www.nhs.uk/conditions/rickets/Pages/Introduction.aspx
  5. http://www.jle.com/en/revues/mrh/edocs/magnesium_and_its_relationship_to_c_reactive_protein_among_hemodialysis_patients_278789/article.phtml?tab=texte

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33 thoughts on “Diagnosis of Chronic Fatigue Syndrome/ME – What’s missing?

  1. Both my sons were diagnosed with ME/CFS within months of each other. One was 9 and the other 12 when they fell ill. We had had considerable stress and trauma which triggered ME in my youngest son first and my older son succumbed after nearly dying from Weils Disease. They were both ill with ME for 3 years and, whilst following NHS ‘protocol’ for ME, I also tried various ‘alternatives’, all of which were helpful and suggested most of the findings mentioned in the above article. However, it was only after my sons were taught a ‘Process’ by Ben Oakley that BOTH boys were able to ‘mend’ and become normal kids again … after only three days of training. The process taught them that after being ill and after suffering trauma, the immune system of both boys was shot to pieces, but even though they started to get better, their brains didn’t ‘switch off’ the belief that they were ill and instead their brains piled on negativity and made them feel ‘more’ unwell. Once they learned to replace negativity with positivity, they mended and, ten years later, they are still well and even after suffering more traumas or illnesses, they still … probably unconsciously … use the process to stay positive and healthy and completely ‘normal’. The NHS knows about the Process and even started trials on children with ME in Bath some years ago, but I don’t know why the Process isn’t automatically offered after diagnosis of ME/CFS/Fibromyalgia, etc.

    1. Hi J B.

      While I’m pleased your sons responded to this Process I would like to point out that M.E. is a chronic, debilitating, neurological disease and not something that can be cured just by positive thinking of any kind.

      There are mountains of scientific proof that M.E. has a serious physical impact throughout the entire body with changes even occurring on a cellular level.

      On the other had, the process you describe sounds remarkably like the Lightening Process which has never been subjected to unbiased study or research.

      I advise extreme caution for anyone with M.E. who reads of miracle cures or anything that will heal you in a few days.

      1. I did the Lightning Process in 2013 for chronic fatigue syndrome and on the third day all of my symptoms disappeared and they’ve never returned (it’s now 2018). It was astonishing. I also has many other positive improvements from the training which remain with me to this day. I learned much about the how the mind works and how we massive influence on what happens to our physical and mental health. It’s the best thing I’ve ever done. I can’t recommend its highly enough. Nothing to be cautious about.

  2. Have you never read’The Beat Fatigue Handbook’ Erica White DipION pub in 2000 by Thorson?
    Erica had herself suffered from ME and after curing herself had been treating her clients for years basing much of her work around a malfunctioning endocrine system. I have also been doing much the same as well and also looking at the gut , re candida and bad bacteria and parasites.
    I was very interested to read your article but why is this now looked at as breaking news ?

    1. Hi Ann – thank you for your comments. It wasn’t about breaking news it was just that I was prompted by quite a few people and their misconceptions about Chronic Fatigue to write an article that wasn’t seeking to be a complete answer, but perhaps just looked at a few key nutrients that have got to be worth trying for any one who is suffering with fatigue issues.

      All best,
      Alyssa

  3. I was diagnosed with Chronic Fatigue about 10 years (about 1987)after an hysterectomy went wrong. I had great fluctuations in hormones over the month, developed gout and was prescribed the Hormone replacement therapy. I then developed Chronic Fatigue and then Irritable Bowel Syndrome. I was teaching and subject to constant changes, lived on adrenalin and could feel it subside as I drove home each day. Any ailment makes me feel very ‘weary’ and I do, occasionally, take a small spoonful of Marmite.

    1. Hi Sheila

      You might like to try my recommendations above, if you haven’t already! But also there is a link between hysterectomy and thyroid issues!

      I do hope that you’re feeling better now though.

      all best,

      Alyssa

  4. With regards to the opinion that graded exercise therapy (GET) and CBT actually help CFS in most cases, the national M.E. charities have carried out surveys on both of these approaches and found that in up to 50% of cases GET can actually cause DETERIORATION in the condition. 50% of respondents to an Action for M.E. survey stated that CBT had either had no effect whatsoever or actually made their condition worse. There is increasing evidence to show that there is something wrong at cellular level as people with M.E. produce far more lactic acid after exercise, as well as a growing amount of research into mitochondrial dysfunction, indicating a problem with ATP production in the cells. This would perhaps explain why GET can be such a dangerous therapy for many people with this condition. I agree that adrenal dysfunction, vitamin and mineral deficiencies and thyroid all play a part but there is also increasing evidence to show the usefulness of supplements such as D-ribose as well which help support ATP production.

  5. Interesting and useful article! I was diagnosed with fibromyalgia 25 years ago (another unexplained condition) and have tried everything medical, complimentary and alternative over the years. I am now 100% healthy – due to three things in conjunction (although it took me years to get there…) getting thyroxine for my poorly working thyroid, taking 5000iu of vit D daily and – the magic bit – realising how my emotional and mental stresses from childhood on had impacted on my health. I did this by reading ‘The Divided Mind’ by John Sarno and joining the TMSwiki group with free structured educational programme.
    I would urge anyone reading this article to try the steps mentioned above – but also realise that the stress that causes the adrenals/thyroid etc problems could well be impacted by our emotional and mental well-being. With all the three strands in place it took me less than two years to get better – how I wish I had learned about it 25 years ago!

    1. Hi Jo,

      Many thanks for your comment. It is so pleasing to hear when someone such as yourself, through self-empowerment and pure motivation, can fully recover from such a condition. I could not be happier for you. If you are still taking the daily Vitamin D supplement, please do get in touch (amanda@well-being.co.uk) and we would happily send you a free pot.

      Best wishes,
      Amanda

  6. I have had ME for 10 years, but it is gradually getting better. I will try the vitamins and magnesium you suggest and see if there is any improvement. At the moment I find it very difficult to do the gardening for as long as I would like because if I overdo lifting and bending I develop aches all over and eventually come to a stand still, like going into slow motion. When the attack is bad I will loose the ability to speak or think and get very irritable. My body shuts down and I can only go to bed and sleep. I get very drowsy on awakening and often bump into the furniture, after about a hour this will improve.

    1. Hello Julie,

      It really does sound as if you need more assistance here. Are you seeing practitioner? If not, I suggest this is a good first step to take so that you can get some more personalized help with your condition. We do have a Health Questionnaire that we offer to our customers, and we would be more than happy to send you one of these. The entire process is free. It allows us to look at your diet and overall lifestyle to see if there is anything we think you could be doing to improve your symptoms.
      All the best,
      Amanda

      1. Hi ,
        Thank you for your reply it would be great if you could send me the Health Questionnaire, my doctors are unable to help really and say that my coping strategy is very good so have not suggested anything else.
        Do you send this to me via email?

        1. That is no problem. I will arrange for a health questionnaire to be sent to you via e-mail tomorrow.

          All the best,
          Amanda

  7. As always an interesting informative article from cytoplan.you can always be relied on for accuracy,and you get to the nitty gritty.

  8. Some genuinely wonderful content on this site, regards for contribution. “The difference between fiction and reality Fiction has to make sense.” by Tom Clancy.

  9. Please can you send me a health questionnaire too? I have high cortisol levels but everything else is OK. My thyroid levels are OK,but my ent specialist said my thyroid is enlarged.
    I’ve had ME for 21yrs and am really struggling at the moment.
    Thanks in advance.
    Louise Parish 🙂

  10. I browse online health-related blogs quite a bit, and this is the best posting I have ever come across: the information is up-to-date, accurate, detailed and clearly helpful. It is heartening to read the caring and helpful replies to people who are still struggling with their symptoms. It’s so obvious that you are out to help people, not to make money like so many blogs.

  11. I too had ME a lifetime ago and suffered for 15 years before being diagnosed.
    Then I gave up the wonderful, well paid, stressful job…..
    Rented my house out and
    Went to live in South Africa.

    I arrived in SA on the Saturday and my friend told me that she had booked me on an aromatherapy trg course “what is that said I?”
    Well at 5.30am on the Monday I was trg. When I discovered what I would have to do I told the teacher that I would not be able to do it because I suffered from ME and she said that she too had suffered from it but had got well again. She was then Chairperson of the ME Association in SA and I now know that I was very blessed to have met her.
    I did do the trg and was treated with the appropriate oils and put on two special diets for the ME and Candida in my stomach and I did get better!
    The above all contributed to this happy outcome.

    1. Hi Val – Thank you for your story it’s always heartwarming to hear about people who have used more natural means to help themselves get well again. After all, getting well more naturally doesn’t mean living with unpleasant side effects!

      Best wishes, Alyssa

  12. Brilliant Alyssa as your articles always are. As you may remember I was diagnosed with ME, chronic fatigue, Leaky Gut over 20 years ago and thanks to your advice when we worked together in Guernsey life has been less of a struggle. I still battle with food intolerances and candida but I have been helped by Rachel Welsh a Homeopath who also uses NAET treatment for reversing food intolerances.
    However I still take the supplements you recommended all those years ago, along with the Progest cream.
    Warm regards
    Maureen

    1. Hi Maureen – How lovely to hear from you and thank you for your kind words! 🙂 It’s so good to know that you are still doing well. It’s been a long time now. Sending you warm wishes, Alyssa

  13. i recently found that i’m also a victim of myalgic encephalomyelitis, i was having problems from last 5 years but now after few sittings with my physiatrist, i needed some information on this topic, your blog is really helpful thanks for sharing

    1. Hi vitamin B12 – thank you, I’m glad you found it helpful. See if you can get your adrenal function looked at. You won’t find it in the conventional medical approach, but it’s worth doing as it impacts so many things regarding ME. wishing you well, Alyssa

    1. Hi Veronica,

      Thank you for your comment on our blog.
      I believe Doctors use either Cyanocobalamin or Hydroycobalamin as the injectable form. If you’d like to discuss this in further detail you can email me on amanda@cytoplan.co.uk

      Thanks,
      Amanda

  14. Hi Alex here yes l agree with lots said about ME l too suffer with this ilness?On the outside ut l look very healthy.Dr sara Myhill tested me find that l was one of her worse cases todate that about 5year ago now!when Dr GP got letter from Dr Myhill ask my did you read letter?My Dr said l haven got time for that?At the time B12 injections was mentioned. l had the money then to pay for myself but only needed a Nurse to me injections.No help given me only anti depressants drug?Also N.H.S Will not except my Private Test.So now only get offered anti depressants drugs?I need help what can l do?

  15. I have often wondered if the T4 factor in thyroid function is worth investigating in my case. I have had numerous thyroid function tests in the 21 years i have had chronic fatigue, which have come back negative.

    1. Hello Elaine, you need to find out if your GP is testing TSH and fT4. They usually start with TSH (the pituitary hormone) as an indicator, but stress can affect this. It’s also worth looking at antibody levels as autoimmune thyroiditis (Hashimoto’s) is responsible for 90% of hypothyroidism. They very rarely test antibodies as they cannot treat until you are in the zone of the NICE guidelines (for TSH/fT4 only). I recommend looking into private testing if you can – you may get some important answers. I hope that’s helpful.

    1. Hi Glen,

      Thank you for your comment. The blog link in question can be found in our most recent blog: Chronic Fatigue Syndrome and Fibromyalgia. You can follow this link to sign up to the webinar which is hosted on Monday 22nd January.

      Regards,
      Cytoplan Editorial Team

  16. I would like to comment that long sentences such as yours, are a little over congested for those reading with CFS. Rarely do I see ‘experts’ writing with compassion and understanding to the needs of the sufferer. You have covered the mechanics of body-mind immunity with the intention of selling supplements, but I find the article lacks solution based lifestyle steps which could also support your readership.

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