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After considering the matter for sometime, I have decided today to begin the process of shutting down 'Chronic Fatigue Syndrome Treatment' and all of its related content. The decision was not taken lightly and I hope to explain a bit about what led me to this choice in the blog below. I will make all the content of the site/blog available for download and will continue to be available for those who I am already engaged with.
When I first started the website about 14 months ago, my mission was to bring knowledge to M.E/C.F.S. sufferers that wasn't available to them and to give them more affordable access to treatment. Over that time, I've been blessed to see some great successes with my clients. I always felt that there were doctors in the community that saved my life, and I really wanted to repay the debt of kindness that they showed me. I was fortunate enough to be able to direct one client towards life saving treatment, as well as receive heartfelt messages from others who were struggling to find the motivation to go on living and decided to fight on as a result of the help I was able to offer. All but one of my clients saw improvement on the protocols and treatment regimes I used, which was very exciting to see. For such a complex illness, with only a 5% full recovery rate and 40% improvement rate on average (as detailed on the prognosis section of the M.E. association website), the fact that I was helping nudge these percentages in the right direction was very encouraging.
So what changed to lead me to make today's decision?
Even in the 14 months that I've been doing this, I've become aware that the community are becoming more and more educated on the likely underlying causes of chronic fatigue, so much so that I actually am starting to see sources of information much similar to my own with a wider reach. One such example might be Dr Rawls's website. Though Dr Rawls has himself been practicing in this field for many years, he has recently begun to step away from clinical practice in order to promote the knowledge he has more heavily. He now has a number of health coaches (similar to my role) that aim to spread his understanding and recommendations for treatment. At the start of this journey, it felt like I was paddling by myself with the knowledge I had gained, now it feels like I am surfing a wave of knowledge with the community. My involvement on the wave, to stretch the metaphor, no longer seems as vital as it once did. My original mission, to bring new knowledge and cheaper treatment, I am happy to say, is becoming increasingly redundant with all the progress in this space.
On a personal level, this work has also been very challenging. It has been very difficult to work in the UK as a independent nutritional therapist, to some extent stuck between being a former patient and a qualified doctor. I required maximum freedom to educate people on this mysterious and poorly understood illness, but it is extremely difficult to work in medicine without the support of an institution or as a qualified doctor. While perfectly legal to offer my services as a health coach/nutritional therapist, it is a very stressful place to occupy in the profession and I have found it difficult to negotiate the various legal implications and my precise responsibilities as a practitioner. One of the main reasons I think the NHS works so well for most conditions is that it takes pressure off individual staff members with a robust framework that allows them to do their job to the best of their ability with the guidance of fellow staff members, superiors, guidelines, legal protection and standardised education. My selling point for helping people with chronic fatigue has always been that I had it myself: it just so happens that my recovery from it involved research outside of the conventional system. But as the conventional system (mostly the private system at this time) becomes more and more adept at treating complex chronic illness, taking the risks of placing myself outside the system seems less and less valuable. I personally felt it was time to recognise this and draw a line under the work I had done.
So what have I learned from my experiences during this time?
Firstly, the chronic fatigue community have been an absolute delight. You guys have been going through something that almost no one else can understand, on par with the most serious of illnesses, and you are doing it with grace and determination. Your continual desire to share ideas and move forward against such difficult circumstances continues to inspire me every day.
Secondly, the answers for your recovery are out there. The people who I see make the best improvements are the people that take the most time to do research and stick to treatment protocols for long periods of time. This is an incredibly complex condition and recovery is challenging, but I strongly disagree with those that say that M.E./C.F.S. is incurable. Finding out root causes is a key element, as well as following through on wide ranging treatments, and having the faith and discipline to carry on. Recovery truly is possible.
Finally, be prepared to improvise. The body is complex, and trusting your body in how it responds to treatment is key. Learning about the herx reaction is useful, but remember to be aware and trust yourself if something isn't working for you. When I was first undergoing psychological treatment for M.E./C.F.S., I didn't trust myself when my body told me this was not what it needed, and it took me a long time to realise that this sort of intuition can be very valuable when paired with great research and treatment.
In the next few weeks, I will begin to remove and take down elements of my work until finally my email and the group is deactivated. Everything I have written (blogs and guide) will be made available to download on the facebook group for a few weeks, so you can download it and return to it at any time. Any old clients of mine or people I am already talking to are welcome to continue with me as before. I have no intention of leaving any of you hanging! I will send everyone I am aware of a link to my personal email so if you require further help from me, please send me an email and I will do my best to get back to you as quickly as possible. You'll need to send me an email to get hold of me as I'll be stepping back from actively engaging with everybody but I'm happy to respond if you do need me.
I'd like to finish off by giving a heartfelt thanks to everyone that I've worked with and come into contact with during this time. It's been a real privilege to work with all and see your compassion, resilience and good humour in the face of all the struggles you are going through.
Thank you,
JK
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When I was recovering from chronic fatigue syndrome and beginning to get my life back, I was feeling a lot more comfortable and starting to reduce the various medications I was on to move to a more natural approach, with less side effects from using pharmaceutical medication. As someone who was on a large amount of antidepressants however, as I got off the medication, I felt like my body just wasn't ready to hold its own without support from the antidepressants. My brain just wasn't producing enough serotonin, the 'happy chemical' that regulates mood (chemical symbol above). In this blog, I look at some of the reasons that people with chronic fatigue syndrome suffer unduly with depression and the strategies that can help you deal with these issues, including what worked for me.
There are a number of areas that set chronic fatigue sufferers apart from the general population that are risk factors for depression. The first notable one would be that people with chronic fatigue often have very poor gut health. An incredible fact is that 90% of serotonin in the body is made in the gut, so when the digestive system is compromised, is it any wonder that it leads to depression? Many of the causes of M.E./C.F.S. are gut related, including candida and parasitic infection. 'Leaky gut', where the gut lining breaks down and toxins escape, is very common. So the first step to healing the mind is healing the gut.
In the protocol that I recommend for lyme disease (though this information also applies to many other chronic fatigue causes), there is a strict diet to slow down the growth of infection and help prevent leaky gut, probiotics to repair the gut flora, binders to help mop up the toxins that are produced by infections and environmental stresses, and a supplement called Rain Core that I used to help rebuild the gut lining. All of these treatments lead to a healthier and more efficient digestive system, which is a huge step towards effective serotonin production.
The second issue that M.E. or C.F.S. sufferers face is the infections themselves. All of the various infections and causes which cause the umbrella illness 'chronic fatigue' are going to put additional pressure on the body which will slow down chemical reactions and depress the body's systems, including your mood. Therefore, depression can often be a symptom physically created by the underlying root causes of your illness. It is not just the case that because you are ill, you become psychologically depressed, there is a direct correlation between the infection and your mood.
One particularly nasty infection that is responsible for huge drops in mood is babesia, a co-infection of lyme disease. For those that have babesia, it is very common to have an all encompassing black depression that never seems to lift. When I was suffering with a babesia infection I felt suicidal even though I was on a strong dose of antidepressants. However, when you know it is not you that is going crazy, but rather chemical imbalances caused by infection, you can begin to treat the infections and forgive yourself for feeling depressed during the process. Dealing with the range of causes that make up chronic fatigue is paramount to overcoming depression. I write more about dealing with babesia here, and if you are a bit confused about the likely causes of chronic fatigue, I have a guide that you can read here. You can also get in contact with me directly if you would like additional help putting together a plan for improving your health.
The third big issue that M.E./C.F.S. patients come up against is their genetic profile. If you have chronic fatigue syndrome, chances are you have some genetic mutations which predispose you to becoming ill. The most crucial and most discussed of these is the MTHFR mutation. Having a mutation in this gene increases your susceptibility to depression by 500%. Around 40% of the population have a mutation, though there are more and less severe forms. This mutation affects the body's ability to process the B vitamin folate. Depending on the severity of the mutation, this process can be up to 70% less active. When folate is activated correctly, it increases the production of BH4, a co-factor which helps the body produce more serotonin. So the key takeaway is that there is a genetic predisposition to depression common to chronic fatigue sufferers.
So how do you get around this fact that there is a bottleneck in the production of serotonin? For very severe depression sufferers, you may want to use antidepressants to help you, especially when undergoing treatment for infections as explained above. This doesn't really get down to the deep root causes of why you aren't producing enough serotonin (e.g. MTHFR mutation) but if they keep you stable through a rough patch in your treatment and life then they are worth doing. SSRIs (the most common class of antidepressant) prevent the absorption (known as reuptake) of serotonin by nerve cells, meaning you get more activity from each serotonin neurotransmitter. However, the better alternative would just to have more serotonin produced by your body. Unfortunately, you can't just take serotonin directly, as it can't cross the blood-brain barrier. You need to take chemicals that are the building blocks of serotonin that can cross the blood-brain barrier, and then the body can convert them later.
As recovery progresses and you look to more sophisticated alternatives, one thing that has worked well for me is 5-HTP. In the chemical pathway that creates serotonin, 5-HTP is the amino acid that is the final step before the production of serotonin. Crucially, it can cross the blood-brain barrier. Some people also take L-tryptophan, which is one more step back in the production of serotonin, but it can also cross the blood-brain barrier. They are less toxic than antidepressants and are naturally derived, but they shouldn't be taken together with antidepressants. This could lead to serotonin syndrome, an overproduction of serotonin which can be dangerous. I personally just use 5-HTP.
Vitamin B6 and B12 are also useful in supporting MTHFR pathways. I include these in the lyme protocol that I used to treat my own illness. Another option is to use a mushroom mix for additional support. A good mushroom mix (for example, I use the ecoNugenics MycoPhyto complex) helps to boost and regulate mood. Meditation also has a significant mood balancing effect, as well as reducing inflammation and boosting immunity. If you are able (though you shouldn't push yourself on this), regular exercise also increases the production of serotonin in the body. However if you are chronically fatigued, it is best to wait until you are strong enough to do this without increase in symptoms and/or delayed fatigue, as this can do more harm than good.
As I mentioned earlier, the MTHFR mutation is responsible for affecting the way the body can process folate (also known as B9)
leading to less active folate in the body. So why not supplement with folate? Well, this can be a mixed bag, which is why I don't recommend it and did not use it in my protocol. The problem is that the body has issues processing the folate anyway, and too much folate leads to methyl trapping, where unused folate is trapped in the body and causes a range of symptoms including quite extreme stress and anxiety, which is of course the opposite of what we are after! It will right itself eventually but I've seen that this can throw a wrench in things for many people.
I therefore just recommend having a good diet so that there is some but not too much folate intake. However, if you wish to pursue taking additional folate, you want to be very careful about the dose that you take (erring on the side of caution). Also, whereas a doctor would most likely prescribe you folic acid, people with MTHFR want to be taking the active form of B9, L-Methylfolate, which bypasses the step where the body has to activate the B9 itself, meaning there is less likelihood that the folate will remain unused and cause symptoms. Make sure you get the active form of the supplement, there's a good article about how to find that here.
James Kitchin is a former cfs/me sufferer (now recovered), activist and writer. His guide 'JK's Handy Guide to Chronic Fatigue' and his site chronicfatiguesyndrometreatment.co.uk help people with the condition gain more affordable access to information and treatment.
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