Assumptions

This site is written with a number of assumptions. I add them here more to be transparent about my perspective, than to convince you that I am right.

ME/ CFS has been ‘Misfiled’

Unfortunately there is still a lot of heat around the categorisation and definition of these conditions. To me it seems beyond doubt that there is physiological evidence. I get newly published research summaries straight to my inbox and it seems like the problem is more how to wade through all the different strands of significant results to find the meaningful root. My preference would be to leave the assumption implied that all that is needed is more research.

However, there is so much unnecessary controversy about the possible psychiatric basis that, as someone who has lived with ME for 18 years and studied some health psychology, I feel obliged to say something on my blog. My opinion is that the distinction is a false one and a frozen accident determined by how the medical establishment has been divided up. Humans are clever but we can only learn so much, so doctors have specialisms and focus on a particular part of the body. Our bodies don’t respect this subdivision though and most aspects of our health are inter-related in mind-boggling ways. Our gut microbiome can effect how happy we are and our immune system, for example.

In an ideal world we’d see a doctor whose specialism was us personally and they’d look at all aspects of our inter-related health and tweak the impaired bits to keep everything on track. We don’t live in that world though so medical conditions have been allocated to different specialists. This isn’t random but it is a filing system that sometimes makes good sense and sometimes things need to be refiled because it isn’t the first place you’d think to look. ME/CFS are often misfiled under psychiatry which doesn’t make sense. Patients wouldn’t think to look there and the specialist training doesn’t equip them to know about B cells or vasodilation or impaired glucose uptake in muscles.

I don’t agree with the overall filing system, but if you’re going to use it, file appropriately!

There is often the mistaken perception that people with ME (pwme) are prejudiced against mental health issues because they are so vehemently against the ‘psych lobby’. It is not that we are denying that mental health conditions such as depression or schizophrenia are as ‘real’ or important as ME, it is just that we think ME has been misfiled and that as a consequence research and treatment is inadequate and frequently neglectful. You would expect somebody to be disgruntled if they had depression, this was misfiled as ‘cardiovascular’ and they were sent off to a Cardiologist.

Most pwme are also quite sensible when it comes to acknowledging mind:body interaction, if they are not backed into a corner.

Our perception of symptoms is influenced by many different factors and this applies to all illness. Approaches like Cognitive Behaviour Therapy can help many people with chronic illness deal with their difficult circumstances (although possibly due to the therapeutic relationship rather than the specific content). However, because of the history of ‘misfiling’ ME some people are very reluctant to officially admit psychology plays any part in case this is misused and turned against them. This is because, although it is not appropriate to rely on CBT as the treatment for a under researched condition that is likely autoimmune/autonomic in nature, this is what has been happening in the UK. It has been allowed to continue as a consequence of the misfiling.

Other people have given up on the medical establishment after years of no improvement, and rely entirely on alternative medicine and techniques such as meditation. I think the danger with this is it is very difficult to assess whether something is exploitative. Most people end up spending a lot of money going down this route, without really measuring what difference it makes.

I’m choosing a middle ground which I share on this blog: being open-minded about alternative techniques but doing quantified-self style experiments to measure what works; keeping up to date with scientific research; promoting biomedical research and trying to stay self-aware if anything I think or do increases my symptoms.

Stress and ME

• In ME there often appears to be a physiological leaning towards too much Sympathetic Nervous System arousal which is the opposite of a “rest and digest” state needed to heal. This probably isn’t caused by how you think but an autonomic disorder

• This site includes some relaxation resources as the cheapest, easiest way to switch into a “rest and digest” state (not because your condition is caused by false illness beliefs or anything like that)

• Lifting as many stressors as possible from your body is likely to enable your body to use more resources to heal itself (eliminating stress will not be a cure in itself)

• ‘Stress’ is used in a very general sense on this site to include the pressures put on our bodies that exceed our ability to cope with them. For example, viruses, poor diet, emotional strain, work demands, anxious thoughts, low blood sugar, pollution are all stressors in this sense of the word

• This is not the same as ‘suffering from stress’ as a medical diagnosis. Some pwme and similar conditions will suffer from stress or depression or anxiety as well, but this is not the same thing as ME and is not inevitable.

 Miracle Tablet

• ME/CFS has a fraught history with different case definitions and a diagnosis of exclusion. This makes it unlikely that we all have the same problem at a biological level, so it is unlikely that there will be a one size fits all cure. We do share symptoms and common experience though, which should create a sense of comaraderie and activism rather than internal tensions (for example under a Spoonie umbrella)

• There is no one single, easy cure for these conditions in 2016, although rituximab is looking promising for many pwme at a later date

• Remission and substantial improvement is possible though and there are more and more ‘recovery’ stories on the internet. I’ve previously got to 95% well, so I do believe it is achievable as a real thing (not just a case of not having been ill to start with)

• Trying out different combinations of nutrition, medication, pacing and relaxation can improve your quality of life even if you don’t fully recover. This blog considers many different techniques that could help a bit (some included as linked text on this page)

• It is also really important to check for overlaping conditions for which there is already treatment. An example is POTS

• For the time being, we need to find our own, individual combination of what enables our body to heal

 

I do not know what is right for you, I’m still trying to work out what helps me, but may be we can learn together?