See your Doctor and keep in touch regularly.

I get very worried when people tell me that they haven't see their doctor in years. There are numerous reasons like “He can’t do anything for me”. “He does not believe in M.E.”. “He thinks I’m wasting his time”. What your doctor is paid for via you by the state is to look after your health. If for any reason you don’t trust your doctor or don’t get along with him/her, then change. There is no point in carrying on a relationship that doesn’t work. Very often in a practice of several doctors, there may one who is interested in M.E.

You doctor is not a magician. He cannot cure M.E., but is your gateway to treatment. He can prescribed drugs like antidepressants, pain killers etc. You cannot get access to N.H.S. specialists e.g. the Leeds Fatigue Clinic without a G.P. referral. You need him for example to get access to the other NHS services like the Pain Control Clinic. Really everyone with M.E. should visit their doctor at least every six months. This will enable him to follow your case, and adjust treatments etc. as required.

Another reason you should keep in contact with your doctor is for DSS benefits. When benefits are claimed, the DSS send questionnaires to your doctor without your knowledge. It is important that he knows your problems, especially if benefits are disputed. It is difficult to prove your case without his support. Ideally everyone should attend a specialist like the Leeds Fatigue Clinic at onset, and be seen every year. The economics of the NHS make this a dream rather than a reality. M.E.’s very often can suffer other medical conditions, or new conditions may arise. It is important that they are screened for, and checked. They may be more serious than M.E. or may just aggravate the fatigue. The important thing is that something is done about it. Here are examples why:-
One lady delayed a thyroid operation because it would aggravate her M.E. After I talked to her, she had the operation and is very much better, but still has M.E.
Another person was diagnosed with bowel cancer. He delayed treatment six months using alternative treatments, being afraid it would affect his M.E. He eventually had the operation, ending up with a colostomy, and eventually died of cancer. He would have had a better chance of survival had treatment started earlier.
One member had bad M.E. No one seemed to be able to help her. She was a regular at a local A&E department. Various things like electric shock therapy were tried. Eventually a consultant realized she had high blood pressure which is not a symptom of M.E. A full clinical investigation revealed a non cancerous kidney tumour . This was operated on successfully, clearing the hypertension and the fatigue.
From the Hull newsletter, a case of Moresch Woltmann (Stiff Person) Syndrome, a rare clinical condition similar to M.E., but unknown to many doctors. It was detected after five years only because the person had kept in touch with his doctors.

It is therefore our policy that before anyone is accepted for membership they have a diagnosis of M.E. from a doctor. It is then the policy that they are encouraged to attend a M.E. clinic like Leeds, who will check the diagnosis IS M.E., and not something that mimics it. A significant number of patients at the Leeds Fatigue Clinic have an alternative or addition diagnosis.

If your doctor is not sure about M.E., we have a leaflet ‘Information for Doctors’, which most doctors are pleased to accept. Alteratively it can be downloaded from the groups website at http://www.leger.me.uk.
Mike
 

UNHELPFUL DOCTORS

Besides your accounts of hospital consultants who take a very hostile or unhelpful approach to anyone who presents at their clinic with a possible diagnosis of CFS/ME it's also clear that many of these doctors don't have a clue when it comes to dealing with patients in a civil and professional manner. The General Medical Council recently issued all doctors in the UK with guidelines on professional conduct. The key points from this advice are summarized below:

Make the care of your patient your first concern.
. Treat every patient politely and considerately.
. Respect a patient's dignity and privacy.
. Listen to patients and respect their views.
. Give patients information in a way they can understand.
. Respect the rights of patients to be fully involved in decisions about their care.
. Keep your professional knowledge and skills up to date.
. Recognize the limits of your professional competence.
. Be honest and trustworthy.
. Make sure that personal beliefs do not prejudice a patient's care.
. Work with colleagues in ways that best serve your patients interests.

No reasonable doctor could disagree with the above. If you come across one who obviously has no respect .for this advice, then a formal complaint to his/her employer or the General Medical Council is a perfectly reasonable course of action to take.

So what action do you take if a doctor makes comments like this about a well known AfME Doncaster member on a DLA form?

He says he has had no exercise since 1992 when he retired. His weight is excessive and has not altered. In my opinion any physical limitation of his walking that might be present would be due to obesity and lack of fitness.

His history, and observed behavour, were not consistant or compatable. None of it corresponds to any case of CFS/ME etc. imaginary or real I’ve seen. To be frank I don’t believe it.!

Well, you’ll have to wait until the next Pathways to find out what happens and how it was dealt with..
Mike



The Importance of the Doctor-Patient Relationship

Early diagnosis and subsequent support and follow-up can be crucial to recovery, and diagnosis is the starting point for social services support. Hardship and anxiety, resulting from loss of income through being too ill to work, hinder recovery and encourage despair. Mothers with small children may need special help. Those who can rest early in the illness - i.e. during the first year, will have a better chance of recovery.
Unfortunately many people with ME/CFS have met with scepticism and criticism from their doctors. Beliefs that ME/CFS 'does not exist' as a disease entity, that patients are malingering, hysterical or exaggerating, serve to increase the confusion and misery caused by the disease. These attitudes have led to many sufferers regarding doctors with defensiveness and hostility.
In practice, the vast majority of ME/CFS sufferers want to get better and rejoin the rest of the world. A common cause of relapse is when a patient feels a bit better, attempts a higher level of activity, and collapses. It is important that doctors encourage patients with ME/CFS to pace themselves carefully, and to take their illness seriously.
 

See your Doctor and keep in touch regularly.

I get very worried when people tell me that they haven't see their doctor in years. There are numerous reasons like “He can’t do anything for me”. “He does not believe in M.E.”. “He thinks I’m wasting his time”. What your doctor is paid for via you by the state is to look after your health. If for any reason you don’t trust your doctor or don’t get along with him/her, then change. There is no point in carrying on a relationship that doesn’twork. Very often in a practice of several doctors, there may one who is interested in M.E.

You doctor is not a magician. He cannot cure M.E., but is your gateway to treatment. He can prescribed drugs like antidepressants, pain killers etc. You cannot get access to N.H.S. specialists e.g. the Leeds Fatigue Clinic without a G.P. referral. You need him for example to get access to the other NHS services like the Pain Control Clinic. Really everyone with M.E. should visit their doctor at least every six months. This will enable him to follow your case, and adjust treatments etc. as required.

Another reason you should keep in contact with your doctor is for DSS benefits. When benefits are claimed, the DSS send questionnaires to your doctor without your knowledge. It is important that he knows your problems, especially if benefits are disputed. It is difficult to prove your case without his support. Ideally everyone should attend a specialist like the Leeds Fatigue Clinic at onset, and be seen every year. The economics of the NHS make this a dream rather than a reality. M.E.’s very often can suffer other medical conditions, or new conditions may arise. It is important that they are screened for, and checked. They may be more serious than M.E. or may just aggravate the fatigue. The important thing is that something is done about it. Here are examples why:-
One lady delayed a thyroid operation because it would aggravate her M.E. After I talked to her, she had the operation and is very much better, but still has M.E.
Another person was diagnosed with bowel cancer. He delayed treatment six months using alternative treatments, being afraid it would affect his M.E. He eventually had the operation, ending up with a colostamy, and eventually died of cancer. He would have had a better chance of survival had treatment started earlier.
One member had bad M.E. No one seemed to be able to help her. She was a regular at a local A&E department. Various things like electric shock therapy were tried. Eventually a consultant realized she had high blood pressure which is not a symptom of M.E. A full clinical investigation revealed a non cancerous kidney tumour . This was operated on successfully, clearing the hypertension and the fatigue.
From the Hull newsletter, a case of Moresch Woltmann (Stiff Person) Syndrome, a rare clinical condition similar to M.E., but unknown to many doctors. It was detected after five years only because the person had kept in touch with his doctors.

It is therefore our policy that before anyone is accepted for membership they have a diagnosis of M.E. from a doctor. It is then the policy that they are encouraged to attend a M.E. clinic like Leeds, who will check the diagnosis IS M.E., and not something that mimics it. A significant number of patients at the Leeds Fatigue Clinic have an alternative or addition diagnosis.

If your doctor is not sure about M.E., we have a leaflet ‘Information for Doctors’, which most doctors are pleased to accept. Alteratively it can be downloaded from the groups website at http://www.leger.me.uk.
Mike