Each week, I am publishing a part in a series about ME/CFS. This is Part III, in which I discuss what limited treatment is available to ME/CFS sufferers. You can find links to the other posts in the series at the bottom of this post.
Last week, I discussed the severity of symptoms of this illness, and shared some stories of severely affected sufferers. This week will be less intense, as I detail the treatment options available for ME/CFS (spoilers: there are none).
“So, what medicines do you take?” is one of the most commonly-uttered phrases I receive after revealing I suffer from ME/CFS. (“HAHA I GET TIRED TOO,” is the most common, and is usually received with a blank stare of eternal hopelessness.) Unfortunately, there is no evidence-based treatment for this illness. A disease with no known aetiology makes treatment difficult, and a recent meta analysis by Griffith University Centre of Neuroimmunology¹ found no evidence for any pharmaceutical intervention. This is hardly surprising, given the little research funding ME/CFS receives. It devastates me that an illness which could affect the lives of so many could be thought so unworthy of research. When an illness is not well-respected, there is no impetus to find a cure (see: what’s in a name? next week).
It is often the first course of action for a medical practitioner to treat ME/CFS symptomatically, as there is no known cause. ME/CFS patients consistently report sleep disturbances, so medical practitioners often work with patients to ensure a better night’s sleep. Good sleep hygiene is encouraged. Depression and other mental illnesses often accompany chronic illnesses, and treating them can alleviate some of the burden of disease placed on an already strained body. For those with pain, various forms of pain relief can be effective; and dysautonomia has some known pharmacological treatments.
Beyond this, many forms of “treatment” offered ME/CFS patients are highly experimental. In this series, I am firmly on the side of evidence-based practice, and won’t go into any treatment, research or “facts” that do not have the rigorous backing of sound scientific study. Having been the victim of many unscrupulous alternative health practitioners in the past, I am loathe to recommend their methods – though I cannot fault anyone who has found them helpful. Let’s just say I eagerly await the study which definitively proves the efficacy of a certain course of treatment.
Meanwhile, all we can do is manage our symptoms – a task that many able-bodied people feel I can undertake with ease. After all, if I rest right, and pace myself, I won’t get sick! The sad fact is that this illness is unpredictable and uncontrollable. I can pace and rest to my heart’s content, do all the right things, and still suffer relapse after relapse. I pride myself* in being a medical mystery to my care team: their most hard working patient who for some perverse reason, suffers the most.
Marcia Harmon of the CFIDS Association spoke with several prominent ME/CFS physicians and reported that:
“It would be wrong to conclude that if patients just work hard enough to find the right combination of all the treatment strategies…. then they’ll get better, or at least substantially improve. The bitter, unpalatable reality is that CFS patients can be proactive, they can have a good attitude, they can try various drug and non-drug interventions, and they can still remain ill, even profoundly disabled.”
There is very little help available for acutely unwell ME/CFS patients. Due to the nature of their disease, patients require a carefully controlled environment, with noise, light, movement and people strictly limited. Of course, a hospital is an intrinsically noisy and busy environment, and as such, facilities that cater for ME/CFS patients are scarce. Many severely unwell ME/CFS patients find themselves at a crossroads of requiring medical intervention, such as hydration, IVs and feeding tubes, but are unable to access these treatments as a hospital stay would dramatically worsen their condition.
We do, however, know what treatments not to prescribe. I have already written about the PACE trials; research conducted in the UK in 2011 which suggested that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) were the gold standard for treatment for ME/CFS. Many medical practitioners dole out advice based on this study, happy to endorse its message that ME/CFS is nothing more a psychosomatic illness, a belief clung to by those who don’t really want to be well. Criticism of the numerous unethical and unscientific practices found in PACE has been growing, and just recently researchers were forced to reveal their raw data (after smearing patient advocacy groups as “borderline sociopathic or psychopathic”, and spending over £200,000 on legal fees trying to hide their data). The data revealed that the PACE researchers significantly overstated patient improvement ratings, and that there was no indication that their interventions led to recovery. This is sadly too late for the many patients who have already had their health irreparably damaged (myself included): all other sources indicate that GET can cause significant harm to ME/CFS patients.
Surveys of patients consistently find that pacing is the best, and only***, way to manage this illness. There are many ways to approach pacing, but it is essentially management of symptoms: the patient acknowledges they have a limited amount of energy to use every day, and doles it out accordingly. If the energy for one day is used up too quickly, the energy available for other days is usurped and payback occurs; usually in the form of pain or a setback. Pacing is often expressed in analogies, such as an “energy envelope” or bank account full of energy – deposits are made in the form of rest, and activities are withdrawals. Going “in the red” is avoided.
“You learn what will bring on a crash–sitting upright at a restaurant, for example–and you just don’t do it. You live in what we call your ‘envelope.’ Then if something special comes along like a birthday, you push the envelope, and if you get a push-back, you know you still have the same boundaries.”
Perhaps the most well-known analogy for pacing is the spoon theory. Created by Christine Miserandino as a means to explain the experience of chronically ill people to her able-bodied friend, the spoon theory imagines the limited amount of energy available to chronically ill people as a finite amount of spoons. A chronically ill person, or “spoonie”, is allocated a certain number of spoons per day, and each activity uses up spoons. Once the spoons are gone, that is it! Nothing more can be achieved that day, and health repercussions may present themselves if spoonies tax their limits.
For instance, I may be allocated 10 spoons per day: 2 are used up in showering and dressing, one in eating meals, another in driving to the shops, etc. Every spoonie is different, and will vary both in spoon/energy allocation, and how many spoons certain activities require. The ultimate goal of these analogies is twofold: one, to help the chronically ill person manage their condition; and two, to help able-bodied people understand the finite amount of energy spoonies have. It is difficult for an able-bodied person, who wakes up with the all the possibilities of the world at their fingertips, to understand that a chronically ill person may only be able to accomplish one task per day.
The spoon theory has spawned a whole subculture: “spoonies” gather online to discuss their lived experiences of being a chronically ill or disabled person. “Spoons” has become a neologism; slang used in chronic illness communities as shorthand for how taxing a certain activity may be. Etsy shops, often run by spoonies themselves, sell spoon-themed jewellery, clothing and accessories. Bracelets read “spoonie”, necklaces and stickers proclaim “save your spoons” and “no more spoons – only knives left.” Spoon theory has become the language of a marginalised group, a way for chronically ill people to identify themselves and express their experiences using easily-understood terms. It is not an overstatement to say that spoon theory changed my life – the friends I have made online in the spoonie community have been my backbone, support and guides through this isolating and devastating illness.
There are many chronically ill patients who have been helped by the spoon theory, ME/CFS sufferers included. There is no denying that it (and other forms of pacing) help, but pacing is management, not treatment. Imagine an MS patient being told there was no pharmaceutical treatment available, and they had to merely manage their ever-worsening symptoms. Yet, until a true treatment is found, pacing is our only option.
So that’s treatment – short and sweet I’m afraid! I eagerly await the day there is true treatment for my illness, but until then, I’m stuck trying to manage my symptoms. This feels more like putting a bandaid on a bursting dam some days! Join me next week, when I discuss the prejudice held against ME/CFS and the implications a name has on attitudes and treatment options.
*Maybe this needs a sarcasm tag – I wish I wasn’t the difficult patient!
**I really like Midsomer Murders.
***I expect feedback from people saying XYZ treatment cured them, and I am glad when patients find something that alleviates their symptoms. However, many such treatments are entirely untested and unproven, so there is no evidence that a treatment that worked for one individual will apply to the rest of the ME/CFS population. In fact, some therapies which may be successful for mild sufferers may severely damage the health of a moderate-severely affected patient. I cannot endorse any treatment which is not backed up by rigorous scientific evidence or a strong approval rating in an extensive patient survey. Just remember: anecdote is not the plural of data.
¹Collatz, A. (2016). A Systematic Review of Drug Therapies for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Clinical Therapeutics, Vol 1, Number 1.
Thanks for reading my Dummies’ Guide to ME/CFS! You can find the other posts here:
Part III, “Treatment”