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Problems related to ME problems
This section covers help and advice, based on personal experience, for handling any hiccups or hazards that may get in the way of your recovery. Click on the links below to find the necessary advice that I can offer you...

  1. Dealing with family and friends
  2. Dealing with doctors
  3. Dealing with employers
  4. Dealing with state benefits issues
If you are unfortunate enough to suffer from ME/CFS there are a whole range of associated problems that you are forced to face up to aside from the disease itself. Having had the disease myself for 7 years I am well aware of many of these difficulties.
Dealing with family and friends Family
I have been lucky in my time in that I have always had the support of my family and friends, and have found some sympathetic medical professionals over the years. It is not only suffrers of the disease who have to cope. Friends and family need to adjust their lifestyles and learn sympathy for what is a very confusing illness to those looking in from the "outside". Many sufferers go through considerable barriers to convince people close to them that they really are ill when that energy could so easily be employed in aiding recovery. I have tried to put myself in the shoes of those who have looked after me and those that have been a shoulder to cry on when the going gets tough. This has made me think how frustrating it must be for someone who loves and cares for you to see you so ill and lacking in life, energy and happiness.

A whole re-adjustment to the new circumstances needs to happen and this can often involve quite painful ralisations that things will not be the same as before the illness. It is inevitable that family and friends will not initially understand your illness. You might find it useful to give them some information on ME/CFS so that they can read about it for themselves. If you encourage them to understand the disease then they will be so much more supportive to your efforts to recover. I have found that healthy friends would try to suggest that I do certain things, try out certain activities and generally do things that my body was telling me that I couldn't do. Having to convince these loved ones that you know that what you are doing is right for you is hard, but eventually people will understand. Some friends will not and it may prove to be a good test of true friendships. Those who really want to help you will trust you to know what's best and will not judge you.

I have found that family members so desperately want you to be well and don't find it easy to see someone close to them suffer. I think that any carer needs to be flexible, understanding that some days are much better than others, but that bad days can follow seemingly very good ones. Allowing the sufferer to maintain some independence is also quite important as they will not want to feel under any additional pressure to do things that they do not want to do. I know that I have had to be strong on occasions when I have been feeling worse and decline to do something with the family that I otherwise would love to have done. I think that is is also useful for carers to get away from ME sufferers at times as it can be quite a strain dealing with someone who is often below par. Finally friends and family ought to remember that they are always loved, whether or not the person suffering from the horrible disease tells them or not!

Dealing with doctors Doctors
You will find a lot of resistance to the fact that you are ill, and this obduracy seems to be rooted in ignorance and prejudice. Ignorance in that many people mis-associate skiving and hypochondria with ME, and prejudice in that you may be judged on your appearance - if you look well, then you must be well! I'm not entirely sure where these attitudes arise from, but it seems clear that much of the disbelief stems from the fact that there is a reluctance to accept that mental and physical conditions are linked in human health. This reluctance is gradually being eroded, and certainly mush research has demonstrated a close linkage between stress and the immune system, for example.

I think that this situation has emerged from our absolute belief in the scientific process that has become a pervading philosophy over the last 200 years. In terms of illnesses that combine mental and physical problems it is very difficult to demonstrate causal links between the disease and physical factors because the diseases themselves are so complex. Consequently it is difficult if not impossible for doctors to say what causes a disease and hence difficult if not impossible to make a diagnosis or offer a cure. As a result the burden of proof for ME is always put on the sufferer because the medical profession has no way of proving one way or the other whether the person they are examining is ill. They are thus forced to accept a lot on trust from their patient. Unfortunately this is totally against the rationale of medical training that is provided to them in medical schools, which tends to engender and maintain the sanctity and superiority of the doctor's judgement, even to the extent that it supersedes the patient's evidence.

I am personally all for the scientific process, because it has proved very reliable in isolating the causes of disease and hence in developing appropriate therapies. Generally you should find that your GP or consultant is prepared to look at the evidence carefully and, as long as they are not prejudiced against ME/CFS in the first place (you should always ask your GP whether he or she actually believes in ME) they should welcome any additional literature or information you can offer. GPs are busy people, so unless you make an effort to help them know more about ME it is sadly unlikely that they will read up on it in their spare time!! The truth of the matter is that there is quite a lot of research published on the topic of ME/CFS. Organisations such as the M.E. Association have an extensive list including all of the papers published in scientific and medical journals on ME/CFS to date. They have also produced a substantial leaflet entitled "ME/CFS/PVFS: An exploration of the key clinical issues" by Dr Charles Shepherd and Dr Abhijit Chaudhuri that is aimed specifically at educating the medical profession.

Ensuring that doctors understand and empathise with the sufferers of ME is obviously important because they are your first line of defence in dealing with employment issues or benefits enquiries when you are faced with questions about your health. I have therefore outlined my tips when dealing with doctors and other health professionals. In my experience it is well worth following some of this advice as it will make your life easier at a time when you need life to be less onerous. So here are my pointers...

  1. Be assertive - I know that this is difficult when you are feeling ill and exhausted, but you must stick to your guns and don't allow the GP to steamroller you into believing that nothing is wrong with you and that you are simply depressed.
  2. Remember you are the best judge of how you feel - be true to yourself and don't understate your symptoms.
  3. Keep your GP on your side - your doctor should have your interests at heart and is an important support if you have problems with work or diasability issues. If you feel that your GP is unsympathetic ask him or her why. If you can't convince them, change your GP as a last resort.
  4. Don't push yourself - allow your body time to recover; going back to work when you are still ill is counter-productive and bad for you in the long run.
  5. Ask to see a specialist - you need to rule out anything other than ME and it is within your rights to ask for routine blood tests to be performed.
Dealing with employers Employers
This can be one of the trickiest areas to cope with because you are dealing with people, on the whole, who are sceptical, if not downright dismissive, of ME/CFS. Although, the tide is turning in the way in which ME/CFS is dealt with I still believe that there is a lot of prejudice around with regards to the disease. When you have problems with your job or with your income you are likely to be faced by people who need a lot of convincing that you are ill. My own experiences are probably quite typical of an ME sufferer's. My employers were quite sympatheitc to begin with and gave me all the support I needed to recover, and I genuinely felt that my condition was understood. However it is worth remembering that most employers are in the business of making money and as soon as you become a liability to them they may think differently about your circumstances.

For this reason I believe it is important to maintain good relations with your employer. Try to keep them informed of your progress, even if you are not making any improvements. Make sure that you are sending in sickness certificates signed by your GP. Your employer may wnat to know when you are going to return to work, but if you cannot foresee this happening in the near future let them know that this is how you feel, and if necessary get your GP to write a letter confirming this. Your employer is required to get your consent if they wish to contact your GP, so information that your GP has on record about your illness cannot be obtained by them without your permission. I was always careful to keep my employer on my side as I wanted them to treat me sympathetically when I went back to work, which they subsequently did. If you are in regular contact then it is less daunting to return to work because the whole idea of a return will seem much less alien.

If you are able to return to work, but only on a very limited scale then it is worth considering "therapeutic work". This is work that is intended to help you recover without throwing you in at the deep end before you can swim. It is less than 16 hours per week, and is arranged such that you still receive benefits. I managed to get back into full-time work at one stage in my illness by doing 2 hours worth of therapeutic work per day. Once I had convinced myself that I could manage this level of activity as well as coping with domestic chores, etc I upped the amount I did and started to work part-time. An gradual return is what you are looking for because you may well continue to have days that are not good whilst you are carrying out therapeutic work. In effect you are testing your body to see what it can cope with.

Your health may eventually prevent you from continuing in your old job. It is quite a big decision to decide to give up your job, and you should certainly be very careful about resigning. Ideally you should explore all possible angles with your present employer and only if you have your GP's support should you consider resigning. It can jeopardise your entitlement to benefits and you need to think carefully about what you might be giving the job up for. It is clearly more difficult to find a new job when you are well enough to work again if you have resigned from your previous job. However, many people who have had ME have thought carefully about what they are capable of doing and what kind of employment is appropriate for them. It is quite possible for you to re-train yourself in something that is much more suited to your ME lifestyle. Trying desperately to return to a form of employment that is clearly too physically and mentally demanding is potentially damaging to your recovery. Think carefully about alternatives before you make any big decisions and talk to as many people as possible.
Dealing with benefits issues Benefits
If you are off work for a long period of time you may be entitled to contractual sick pay, but if this option is not open to you you can claim statutory sick pay (SSP) for a set period of time (about 6 months) before you are required to claim benefits. I have been on many social security benefits in my time and unfortunately know the system quite well! It can be quite daunting and worrying when you are faced with the prospect of having very little money coming in. I have learnt to budget very carefully! First of all you will have to fill in endless forms to claim whatever benefit it is you need, so leave yourself plenty of time to do it. There are a number of benefits that you may be entitled to including Incapacity Benefit, Disability Living Allowance, Income Support and Housing and Council Tax benefits. If you are ever really concerned about a benefits issue then, if you are physically capable of doing so, it is worth visiting the office dealing with your claim (whose address is in the Phone Book) in order to speak to someone face to face. Unfortunately I have never felt confident that a phone query will be dealt with as efficiently.

It is important not to let the whole "benefits issue" upset you. Just accept that you need to do it whilst you're unwell and get someone to help you if you really need it. Keep all of your documents in one place so that you can find them easily, particularly on those days when your brain just isn't working properly. Deal with any problems as soon as you can otherwise you may simply get stressed over the outstanding matters that you can't face until tomorrow. If you want advice on benefits issues you can always use the "Benefits Enquiry Line" (see "Links") or visit your local Citizens Advice Bureau. If you need financial help whilst a claim is being processed you can apply for a special loan from the Benefits Agency that will help you with day-to-day expenses whilst your claim is being assessed.

If you have been receiving a benefit that is based upon your incapacity for work (e.g.Incapacity Benefit) then you may be faced with the unpleasant process of having to attend a medical examination, carried out by a DSS doctor, to assess your condition. This examination assesses various physical tasks and rates incapacity on a points system based on how little or how much you can do of any one task. I have experienced one such assessment and realised afterwards how inadequate it was for ME sufferers. My advice if you have to attend one of these examinations is:
  1. Don't undersell yourself - treat the examination as if it is one of your worst days. When asked to rate your ability to do certain tasks always base your rating on those times when you are feeling worst.
  2. Highlight the variability of your condition - bear in mind that the examination is a snapshot on a particular day and so cannot accuratelt describe your condition as far as living from day to day is concerned.
  3. Don't look too positive or well - unfortunately you will be judged on your physical appearance. I sometimes wonder, if I had winced in mock pain or took a long time to sit down and stand up, whether I would have been taken more seriously. As I am a positive individual with an optimistic outlook I probably appeared to be perfectly healthy! Those with ME know how ridiculous this is!
  4. Emphasise your circumstances - if you have to do everything for yourself domestically, including washing, cooking, shopping, etc, then highlight the fact that you do not have any choice but to do these things yourself even though you may feel too unwell to do them.

If you fail the Benefits Agency tests then you may be refused benefit and be forced to appeal against the decision. This can be a long-winded process and if you are forced down this road it is wise to get advice on what to do. I have been down this road and got help from the local disability advocates service as well as the Citizens Advice Bureau. Sometimes it can take many months before the appeal is heard at a tribunal. You can only argue on the facts at the time of the medical examination. The assessors aren't obliged to take into account previous medical history or events that have happened since the examination, unless you have had a significant deterioration in your symptoms in the intervening period. I became quite stressed and anxious about the prospect of being forced back into work because I failed the medical examination's criteria for incapacity. I felt that the control of my own life was being taken out of my hands and decisions were being made for me. This caused a relapse in my health, further evidence if any were needed that stress can severely affect people with ME/CFS.

The important thing here is to remain calm. There are always options open to you and always people around to help those of us in a disadvantaged position. Support groups are available (see "Support"). My strategy for dealing with these potentially stressful situations is to only think one day ahead, and no more. I plan what I am going to do the next day, but generally no further ahead than that. I contact as many people as possible who I think may be of assistance. You can take someone in with you to a tribunal hearing as support. If you fail at the appeal then you can appeal to the Social Security Commissioners on a point of law, but this is likely to be a long-winded and potentially expensive process.

Should you feel that there is something that you might be able to do with regards to working again (or if you are forced into this situation against your will) there are special Disability Employment Advisors (DEA) who can help with strategies for getting back to work that are much more tailored to the individual's health and other requirements. After all, it is in the interests of the Benefits Agency to have as few people on benefits as possible, so in theory they should be helping you in a way that minimises the chances of a relapse of your ME. Keep everything in perspective - the state is obliged to look after those who do not have the means to look after themselves, so some support is available whatever your circumstances.

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All published data copyright by David Incoll 2001