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.

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?

Web-View: ME Association

The ME Association website was the second stop on my research trail after checking out the NHS offering, and there’s a whole lot going on here. Below are the items on the top menu:

  • Home – gives a few sentences about each section of the site
  • About ME – what is ME/CFS, symptoms and diagnosis, causes, explaining ME/CFS to other people, treatment of ME/CFS.
  • About the MEA – what they do, who’s involved, how to get involved
  • Support – how to contact their helpline, search for your local support group, and information on councelling services
  • Research – current, published, volunteering for, and how the MEA supports reseach (and chooses to which to support)
  • Helpful Services – adverts for products and services that may interest ME/CFS sufferers
  • Contact us
  • How you can help – how to make donations, fundraising events, sponsored activities, fundraising support, ideas, and more
  • MEA shop – books, leaflets, merchandise and gifts, join the MEA

Down the right-hand side are additional links to join the MEA, visit the shop, see the latest news, contact and donation information, quick links to the latest posts, and a searchable archive.

I thought this whole site gave an impression of competence, understanding, and support, which is what they say they’re about.

ME Association: “Informing and supporting those affected by ME/CFS.”

The information is presented clearly in organised, easy-to-assimilate chunks with more details available if you’re willing to pay a small amount to get one of the many leaflets on offer.

The leaflets themselves come in two formats: you can buy online, paying slightly less to get a downloadable version, or send off an order to get a physical leaflet posted out to you (costing a few pence more). The leaflets are approximately four sides of A4, and are available on a variety of topics from general information to medical management to benefits and social care.

I actually first visited this site several years ago but didn’t look at it in detail for two reasons. One, since I was using the computer I know I must have been feeling reasonable and two, when I’m feeling better I try not to think about anything to do with ME/CFS. Sort of like pretending it’s not there. Until it is. I wish I had taken a closer look because there is so much good information here. As well as getting a few of their leaflets to look through, I found my local ME/CFS support group, I’m still reading through some of the information on the website, and I plan to check back now and again to see what research is going on.

Definitel

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?

Web-View: NHS

The first link I chose when looking for information on ME/CFS was the NHS website, assuming it was going to be trustworthy, up-to-date, and have plenty of information.

The condition can be found in the Health A-Z (or use the link above) under Chronic fatigue syndrome or ME. Both take you to the same pages, titled ‘Chronic fatigue syndrome’ which then offers various sections:

  • Overview – divided further into an introduction, symptoms, causes, diagnosis, and treatment.
  • Clinical trials
  • Community
  • At the right-hand side are lists of useful links, both within the NHS site, and external

On the Overview the information is reasonably well laid-out and easy to understand, but it’s pretty general: gives the basics and little else. (Which I guess is kind of the definition of an overview)

The clinical trials tab offers a database search of trials currently taking place. You can filter by whether or not they’re recruiting, trials for children, and which country they’re taking place in. Selecting a link takes you to further details of that trial.

The community has a forum for questions and blog posts, although I’m assuming you need to join/sign up to participate. As you might have guessed from my lack of detailed knowledge, I haven’t been active here, only peeked at the initial page.

Overall I found the website has good basic information which I trust to be accurate at the time of posting (Somewhere on the page should be a ‘last reviewed/next review due’ date) and it seems to be checked every couple of years. I guess a slight concern is, is that often enough to count it as up-to-date? Then again, there haven’t been any major changes in the basic understanding of symptoms, treatments, or causes, and presumably if there were the people who maintain the site would know and update accordingly. Although it doesn’t have masses of detailed information, it offers links to places where there is more: more details of the condition, more support, more information on research.

Symptom: Fatigue

Basic/general points of ME/CFS are covered on the page about me (See Introducing. . .) This post deals purely with the symptom of fatigue, an extreme and persistent exhaustion that is held to be one of the central symptoms of ME/CFS.

NHS: This fatigue is overwhelming and a different type of tiredness than previously experienced.

It can affect the sufferer both physically and mentally, making it difficult to perform everyday tasks. Sleep does not alleviate the symptom, activity often makes it worse, and depending on the severity of the case it can vary from:

  • Needing to take things easy and possibly rest during the day. You may not actually sleep, but you lack the ability to follow your normal routine.
  • Sleeping longer at night and/or needing a nap during the day. You may be able to do a lot of things, but you’ll suffer for it later. Half days are the most you can manage.
  • Sleeping night and day. Even everyday tasks may be beyond your strength, you probably struggle to leave the house, or even your bed.

With ME/CFS, whatever level of severity you suffer from, if you attempt to ‘push through’ then you’ll suffer for it. Your symptoms are likely to last for longer and may get worse.

My experience: My level of fatigue varies greatly from perfectly normal when I’m well to not far from unconscious when I’m at my worst. This is not just tiredness or exhaustion orRelated image ‘I’ve been up for three days straight’. It’s more like zombification, except zombies have more life in them. When I’m severely affected I’m one breath away from comatose. i.e. I might wake up before midday and manage to get up but basically I’m asleep for most of the day, it’s near-impossible to wake me and if you manage it I’ll be asleep again – deeply asleep – in seconds. I’ve read about other people struggling to get downstairs or wash their hair. . . I’m fighting to persuade myself to get out of bed to the loo. I may literally spend a day asleep, waking only a few times to stagger to the bathroom and back.

It’s not always this bad though, that’s only my worst times. My most common level of fatigue these days is up by 10/11am, sleep for some of the afternoon, and in bed asleep by 8.30/9pm. (Again, when I’m suffering an episode, not while I’m well)

My tip: get to know your condition, your warning signs, and as hard as it is (for both you and those around you) it really is better to rest when you need to rather than trying to keep going and then collapse completely.

Category: Medical Information

This is not professional medical advice and should not be treated as such.

So I want to do a quick introduction to this category, because I don’t want to be accused of giving false information or dodgy medical advice. In Medical Information I’ll talk about (surprisingly enough) the medical side of having ME/CFS. Some of the information will be drawn from my own personal experiences, some from the internet or books or other sources. (If it’s somewhere specific I’ll try to cite it) I have no medical qualifications and just because information is included here doesn’t mean I endorse it or have experienced it personally.

I will strive to ensure the information included is accurate, informative, relevant, unbiased, and up-to-date.

I’m hoping to cover causes, symptoms, treatments, classification confusion, and anything else medical that people can think of. If you’d like me to look into something/discuss something and I don’t, then please let me know and I’ll try to do so. Ditto if I get something wrong – the idea here is help people.

This is not professional medical advice and should not be treated as such.