ME/CFS Clinic – I got there!

Yesterday was my appointment at the ME/CFS Clinic. The news is. . .

  1. I really do have ME/CFS. I have been diagnosed twice, so there’s no arguing with it.
  2. There’s no miracle treatment but they think there are things I could try that might help.
  3. I have to wait for a phone call to make an appointment to go back.
  4. I am to start thinking about my future

So I have fallen from one wait to another, and likely there will be another wait after that, and another after that. . .!

Immediate advice I was given was to try using something called ‘First Defence’, which is a thing meant to help prevent you getting colds, and the other thing was to get zinc lozenges, which does the same thing. Anyone heard of those, or tried them?

I’m also to start thinking about what I want to do with my life (I think I might be slightly insulted) which feels like the ‘what do you want to be when you grow up’ question all over again. Being a bit before themselves aren’t they? I mean, there’s positive thinking and then there’s arrogance: just because I’ve been dealing with this without medical supervision doesn’t mean as soon as they get involved I’m going to improve. Maybe I will, but I’m not going to go sky-high with plans just yet.

Think I should tell them something outrageous just to see what they say?!

The other things that I have to go back to learn are ‘tools to help me manage my condition’. From my previous phone call I would guess it’s going to be Graded Exercise Therapy and mindfulness.

  • Graded Exercise Therapy (GET) is when you gradually increases the amount of exercise you can do over a period time. The NHS supports the use of GET as a treatment for ME/CFS. The ME Association does not.
  • Mindfulness is a technique used to reduce stress, anxiety and depression by increasing awareness and ‘living in the moment’.

I’ll probably do a post on of these in the near future – there seems to be a bit of controversy over both methods and it’ll be research for what I might be in for!

I guess this first consultation was mostly just to confirm I have ME/CFS, because I wasn’t really asked anything much about how I cope or the emotional side of things. Which makes sense. The consultant/doctor diagnoses then the occupational therapist takes it from there. I’ll probably have to do another round of questions when I go again. . .

That’s where I’m at at the moment then. Which is pretty much where I was before as far as I can see, except I have appointments and talking and whatnot to (ahem) look forward to. Oh, and when my Gran found out I’d been to see someone she asked, “did they say when you’d be over it?”

By the way, if you haven’t been inundated with the mindfulness craze please let me know. I want to know where you’ve been living so I can go there – it will reduce my stress levels! (No insult intended to those who practice mindfulness, I understand it is a legitimate technique that has had a positive influence on many people.)

ME Association Leaflets

The ME Association (MEA) produces a variety of leaflets on different aspects of ME/CFS. Many of these are based on articles produced for their magazine: ME Essential. These leaflets are only available through the MEA, as a digital download from their online shop or by completing their order form. The majority of the publications cost about £1 depending on your location, and are about 3/4 sides of A4.

The leaflets are divided into groups to make it easier to find what you’re looking for:

  • Benefits & social care – what benefits and assistance are available, help filling in forms
  • General information – what causes ME, your questions answered, explaining ME to other people
  • ME Connect – this is the name of the MEA telephone and email helpline. The series of leaflets was developed based on concerns raised through this service
  • Medical management – symptoms, their management, potential treatments. . .
  • To whom it may concern letters – information on how to make applications and requests

The information in the leaflets is subject-specific, organised, easy to read, and to the point. There are also signs that the older leaflets are updated as well as new ones being added. Because these are just leaflets, there is a limit to how much information is in them, but they seem to cover the main points of their topic and there are often ‘further information’ contacts included.

Potential therapies, whether mainstream medical or alternative, seem to be dealt with with a balanced view – what current theories are, supporting evidence, how reliable this evidence actually is, potential side-affects, current research and trials etc. Where relevant, suggestions to consult your doctor or other specialist are made.

The leaflets are especially handy if you’re interested in a particular topic, because you don’t have to buy a whole book and rummage through for one chapter, you just choose the leaflet you want and (if you get the download) you can get it instantly.

Do watch your spam folder – the first time I bought a leaflet, the email with the link to download ended up in spam!

Conclusion: cheap, useful information on a variety of topics from a reliable source. They tell it how it is – both when things work and when they don’t. The tone of the writing conveys level-headed calm.

These leaflets are not designed to replace reputable medical guidance.

Book-view: ‘Living with M.E.’

Title: Living with M.E.: the chronic/post-viral fatigue syndromeProduct Details

Author: Dr Charles Shepherd

(Image from Amazon. Click here to view)

 

‘Living with ME’, as you might guess from the title, is all about ME/CFS. There are four parts to this book:

  1. What is ME/CFS (definition, history, causes, symptoms, quality of life and recovery, current research)
  2. Practical steps toward coping (dealing with doctors, drug treatments, self-help, mind and body, alternative and complementary approaches)
  3. Learning to live with ME (3 case histories, relationships, jobs, your home, increasing mobility, help and benefits available in Britain)
  4. Appendices (useful names and addresses, further sources of information)

In the blurb on Amazon it is described as ‘A well-researched, comprehensive guide, LIVING WITH M.E. is THE book to buy for any M.E. sufferer who wants information not speculation‘. Certainly as I read it I was going – that is so true. I have that! I never realised that might be connected to having ME/CFS. I wish I’d read this years ago. . . There were also bits that I skimmed or missed out entirely either because they weren’t so relevant to me or I wanted to read other bits more.

What’s almost as interesting as what’s inside the book is the divided opinions it seems to stir up. (Check out the reviews on Amazon!)

A lot of the condemnation levelled seems to relate to 4 points:

  1. Information is out of date. The publication date may be 1999, but the book can be found on the MEA website so presumably has their approval. If that’s not good enough for you then (to put it bluntly) don’t buy it. Also, from what I’ve read, although lots of studies are ongoing there hasn’t been any great change between the majority of what’s in this book and current provable information. Admittedly I did only skim-read some chapters.
  2. Conflicting/confusing advice. Consider: no-one knows what causes this condition, there are a huge range of symptoms, and there are no definite cures or treatments for ME/CFS precisely because what works for some people doesn’t work for others. Is it surprising then that Dr Shepherd doesn’t say ‘do this and you’ll improve’? He gives you information and lets you make up your own mind.
  3. Information is wrong. A serious statement if true and since this book matches information I’ve seen from other sources. . .
  4. It’s discouraging and depressing. I’d say realistic and honest personally. The book does not dispute that people get better. It encourages you to have hope, keep trying, and have a positive attitude toward getting well. What it doesn’t do is give false hope and declare that because one person (even several people) got better this way it means that everyone can.

I got a second hand copy of this book and must admit I was somewhat daunted when I saw the size of it. (512 pages) But, because the information is so clearly divided into sections as well as chapters, and there’s a decent index at the back, you can find what you’re looking for quickly and easily, and you don’t have to read the bits you’re not interested in. If you want to go straight to treatments then do so. If the science of the condition hurts your head (it does go a bit technical in places) skim it, or skip it altogether. Simple.

Because no definite ‘this is so, do this’ advice is given, this may be more of a challenging read than other books on the topic. But surely that proves the information given is thorough, reasonably balanced and genuine? For example, when dealing with alternative and complementary therapies (a large section I feel I should point out) both what the therapy is to treat and potential side-affects are given, then sometimes the author’s opinion on whether this treatment is worth trying.

The book makes you think – here’s the positive, here’s the negative, and have you thought about this?

It’s true, if you want inspirational stories then this probably isn’t the book for you, but if you want facts and useful advice, then this is a decent place to look.

Note: Dr Shepherd is medical adviser to the ME Association, and suffers from ME/CFS himself.

 

Pharmaceuticals

I’m starting off potential treatments for the symptoms of ME/CFS with pharmaceutical drugs because it’s the simplest category, not because they are necessarily better – being a recognised and accepted drug does not automatically make it more effective or safer than other remedies.

The most common drugs to take for ME/CFS are painkillers or antidepressants.

Painkillers or analgesics give relief from pain. They come in various classifications and strengths, each being used to treat a different type of pain. Some are available over the counter, others have to be prescribed, and some over the counter drugs may be prescribed at higher doses if you go see a doctor about it.

Antidepressants are commonly used to treat depression. As with painkillers, there are various types and strengths. While normal doses of these drugs are used to treat depression, lower doses may be suggested to give pain relief or to aid sleep.

Some things to consider:

  • Most drugs have side-affects, especially if you take them long-term
  • Antidepressants can be nasty. People I know have talked about them as ‘only putting off dealing with the real problem’, ‘highly addictive and very hard to come off’, ’cause more problems than they solve’. They are meant to be short-term use only
  • Bodies can adapt, so like with recreational drugs, if you take painkillers over the long-term you may end up needing to increase your dose to get the same result
  • Taking these sorts of drugs may ease the symptom but they are only masking it, not making it better or treating the cause.
  • There is evidence to suggest that painkillers don’t always work, and you could be taking all these pills to no affect. Supporting this conclusion is a BBC program ‘The Doctor who gave up Drugs’.

Personally, I try to avoid taking drugs whenever possible. (Like my mummy told me!) The first question I always ask myself is, do I really need to take this? Obviously, if the symptom is significantly affecting quality of life then you need to do something to try and ease it, and taking pills is often the first thought. My second question is, are there alternatives to consider? The answer to this is yes.

Questions for a Doctor

In the interests of rediscovering all I can about ME/CFS, I made an appointment to see my GP. Although there’s tons of information online, I wanted to get a medical professional’s take on my personal syndrome and how I’ve been coping, current treatments, alternative therapies, and the possibility of starting a family. In ten minutes. It’s possible right?

Here’s something you might not know: just because doctors believe/accept this condition, it doesn’t mean they’re any more sympathetic or know more about it than you do. But I’ll let you decide for yourself.

Highlights of the consultation:

  • I was informed that attitudes towards ME/CFS have progressed since I was diagnosed, and there are therapies to help.
  • I was told I’m lucky not to suffer extreme pain.
  • I was referred to a clinic that specialises in ME/CFS, which means a new round of blood tests to be done first. (The two separate appointments will have their own waiting times of course, ones for the clinic looked to be over a month, so nothing unusual there!)

Bad/worrying points:

  • There was no record of my diagnosis in the system, no mention in my notes of me having ME/CFS. When the GP realised how long it had been since I’d seen a medical professional she was shocked and looked at me like I was crazy. Explaining I was told there was no need for me to see someone unless something changed significantly for the worse (and her admitting they probably couldn’t have done anything anyway) didn’t seem to help.
  • I had it pointed out (several times) that I’ve changed a lot since I was twelve.
  • I was never asked how severe my symptoms were or which ones I had specifically.
  • The advice she gave was to pace myself. Good advice if I hadn’t received it when I was diagnosed and acted on it then.
  • When she heard I lived at home with my parents and had no job she looked more shocked than before and recommended I get a part time job. It would be easy because I have a degree.
  • When I mentioned I’d put off starting a family because I thought it would be too much for me and make my condition worse, she (again) looked at me like I was crazy. There’s no need for that, she said, that’s what a partner’s for, and finding one of those is what a job’s for. (?????)

The result? I have a referral, learnt that ‘acceptance’ doesn’t necessarily make things better, that I was incredibly lucky when I first went to see doctors about my illness, and I’ve had the value of the understanding, curious, ordinary people I’ve met during my life reinforced.

Today there were questions I didn’t ask because I felt my GP hadn’t troubled to understand my condition and my situation, instead making assumptions and judgements. Maybe she’s right and these blood tests will show I have some other condition that can be treated with a pill or an injection or whatever – it has been many years with many changes since I was twelve after all. Maybe I should do what she says: get a job and start living my life because I’m so young and missing out on so much by isolating myself. . .

Uh, wait a minute. What was that about the progression of attitudes toward ME/CFS?

A Condition of Variability

So far I haven’t covered in detail the most characteristic aspect of ME/CFS:

Variability

Cause, symptoms, treatments, they all vary from person to person so that in effect everyone has a unique condition. Added to this, there are fluctuations in the severity of symptoms both long-term and short-term.

  • Long-term – symptoms and their severity may alter, usually lessening if the person is coping well, but there can also be relapses where symptoms become worse than ever.
  • Short-term – often the person appears perfectly well, then without much (if any) warning they can become severely restricted in their activities.

In-between these two extremes there can exist the feeling of being ‘not quite right’. This in-between stage can persist for months at a time without the person developing the extreme pain, fatigue, etc that are commonly held to be the most disabling symptoms. (More on these three stages later)

This variability makes ME/CFS a difficult condition. Difficult to diagnose, to try and treat, to research, to live with. Difficult to believe in. (It’s easier to accept and understand when there’s a visible symptom, less so when there isn’t, and it gets even harder when the sufferer can go from living their life to incapable of cooking a meal within a single hour.)

So although variability isn’t in itself a symptom, I think it’s a major part of ME/CFS, and learning to accept that – that changes can be fast and unexpected – is an important step in coping. Also to be aware that your syndrome may not stay exactly the same the whole time you have it – when I was younger I got quite a lot of joint pain and headaches; recently  I realised I don’t get those symptoms so much but the brain fog seems worse and I’m more sensitive to noise.

True variations? Or something I’m picking up on since I started researching current thinking?

A Slice of History

I was diagnosed with ME/CFS as a child. I was in the last year of middle school (aged 10/11) and both the school and my parents said it was essential to find out why I was ill so much before I moved up to senior school. I was taken to the doctor, who asked questions and ran tests and sent me to the hospital, who asked questions and ran tests, and assigned me a consultant who- you get the idea.

With everything else ruled out, and since I’d had the symptoms for over a year (never mind the mandatory three months) she diagnosed me. She suggested that the trigger in my case – or at least a significant contributing factor – could be environmental: sick building syndrome. Between my first and second years (aged 8/9) the school moved to a brand new building. Right after that lots of people – students and staff – suffered with severe headaches and were going to the doctor with all sorts of medical complaints.

After being told I had this condition, my consultant said it was really unusual to get it so young (lucky me) and it was most likely I would have it for x years (I can’t remember the exact number) and then it would go into remission, hopefully for good but possibly flaring up if I had a period of excessive emotional or physical stress. If it persisted past that number, I would probably suffer from it to some degree for the rest of my life.

As for treatment. . . There is no cure, no single treatment. It was suggested I could keep a diary to help me cope (no thanks) see a therapist/have counselling (but you don’t really need to since you have a good relationship with your mother) and apart from that. . . try and learn to live with it.

I learned. It persisted.

But I’m sill here.

I know some people see my life as wasted and me as a layabout, because I don’t have a job, because I’m ill so much of the time, because my life isn’t conventional. (A ‘normal’ life, what’s that?) But most days I feel I’ve done the best I could, and I do do what I can when I can.

And I am still here.